Journal entry by Gabbie Kramer —
I know it has been SO long since I've done one of these. If I am being completely honest, there is a huge feeling of overwhelm whenever I have sat down to update or even thought about everything that has been going on. I've posted small updates here and there on Facebook but there have been a lot of little things that have happened over the last month and a half. Three weeks of updates coming to you now (sorry this is so long), as well as what's to come.
Noah responded really well after his last blood transfusion. He handled the in-patient portion of cycle 5 of chemo well with limited nausea and side effects, as well. However day 11 of cycle 5 hit us like a ton of bricks. We had a wonderful day as a family, but while getting ready for bed, Noah began to complain of a headache, his legs hurting, the light bothering him, and shortly afterwards, his whole body began to shake. We took his temperature, and it was 102.3 and rising. Per the on-call doctor's orders, we rushed him to the OR. This was overwhelming and scary all at the same time, and Covid just added another level of fear and complexity to everything.
The ER handled our situation with care and caution, as they got Noah back to a room immediately without having to even stand in the waiting room. They drew 4 vials of blood.. some of the results came quickly, and others required some waiting. His hemoglobin had dropped to 6.3 (anything below 7 is unsafe), so they gave him a blood transfusion as quickly as they could. His ANC was 620 (moderately at risk for infection--anything below 500 is severe risk) and white blood cell count was 1-->he was neutropenic. The doctors told Jason he needed to be put on 2 broad-spectrum antibiotics to fight off risk of infection and sepsis.
In the middle of the night, the blood cultures that they had drawn when he first arrived came back. They showed that he already had an infection in his blood. They drew more blood to be able to test antibiotics and determine what type of infection he had. His platelet count also dropped which meant that he needed a platelet transfusion the next morning. All while this was happening, they were struggling to get his fever down. It continued to spike and Tylenol was NOT doing anything. Once it hit 105.8, they covered his body in ice. It took about 3 hours to bring his fever down, but it finally dropped below 99.0. After the platelet transfusion, his levels began to rise slowly over the next couple of days. However, his fever spiked two more times over the next 2 days.
Noah was also still having an awful time with his leg pain behind both knees. He was struggling to stand or put any pressure on them, and he spent a lot of time crying because of it. Fast forward to today, we now know that he was experiencing a side effect (neuropathy) from one of his chemo medications. I will touch on that more in a bit.
The blood cultures came back in waves, and each time they came back, they showed more detail about the infections and more infections appeared. He ended up have 3 different infections in his blood and had to be put on 3 antibiotics. I learned that they take the blood and put it in different wells in the lab and put different antibiotics on it to see which ones are the most effective for treating the infections. Based on the daily blood draws, they determined that the infection was stemming from his PICC line in his arm. Once they made that determination, they removed the line pretty quickly. Unfortunately, this meant that Noah had to be poked with needles daily for blood draws. They blew 2 veins in his arms which was incredibly painful for Noah. They also found that 1 of the infections they found was antibiotic resistant. Protocol through Nemours and Wolfson's hospital states that any hospital staff who enters the room must be fully gowned and gloved... this was super overwhelming for Noah and me.
Once the PICC line was out, things began to improve--Noah's mood, his numbers, fevers, and appetite. After giving him antibiotics for another 5 days, they scheduled Noah for a new PICC line to be put in so they could do the remainder of chemo. While in surgery, they found that he had a blocked vein in his right arm which they are assuming is scar tissue from the last PICC line. This required them to go into his left arm instead. He was pretty sore for the next day or so from all the needles and where they put the line in. We were able to go home 8 days after we first arrived at the hospital, but we had to come home with 10 days of IV antibiotics that Jason and I had to give to Noah FIVE times daily. Let me repeat that FIVE TIMES DAILY! It was exhausting trying to stay on top of taking the meds out of the refrigerator so they could come to room temperature and hooking him up to the antibiotics and then removing the antibiotics and hep-locking him.
After 5 days at home, Noah came in our room in the middle of the night 2 days in a row screaming about the frogs that were everywhere. It sounds funny when you read it, but the fear in his eyes and the tension in his body was so awful to see. He had a pretty uncommon side effect from one of his 2 antibiotics and was hallucinating. He felt frogs and bugs crawling all over him, and he could see them all over the floor and our beds. The doctors had us stop the antibiotics, which helped with the hallucinations.
It did not, however, help with the pure panic and fear that was now in Noah's mind. Noah is afraid to sleep in his room alone, he is afraid to have any lights off, and even just closing his eyes scares him. He wakes up multiple times during the night, crying in fear. We know that this will slowly get better with time, but it is devastating to see him have such huge fears at this age, and it is also EXHAUSTING to not sleep for 5 nights in a row.
In addition to the fear, the FEELINGS of bugs and frogs on his legs or the pain in his legs did not go away at all. This led to us finding out that the pain and tingling in his legs was neuropathy. He was put on a medication for that 3 times a day to help with the sensations. We are still working on figuring out the correct dosage of that, so there is definitely residual pain and discomfort. Unfortunately, the medication for this also caused Noah to have insomnia. I'm not talking about the type of insomnia where kids wake up often. I'm talking about staying awake and playing all night while everyone else is asleep. He is now on another medication to help him sleep. It breaks my heart to see his sweet innocent body being exposed to all these medications.
This brings us to now. We are in the hospital for his sixth and FINAL round of in-patient chemo treatments. It is so exciting to know that we are just around the corner from the end. Noah has been pretty exhausted the last 2 days in the hospital, and he is having some pretty intense mood swings. That could be from any of the multiple medications that he is on. After we leave the hopsital on Sunday, we will have 3 more doctor's appointments to check his blood levels. Then, he will have a CT and PET scan (not positive when these are yet). Once these are complete, he will be able to have his PICC line removed, and we will move to a new schedule for appointments and scans. He will not be considered in remission for 2 years, but I cannot tell you how amazing it will feel to hear the doctor say that there is no cancer in his body and that he is DONE with chemo.
Prayer requests:
Noah responded really well after his last blood transfusion. He handled the in-patient portion of cycle 5 of chemo well with limited nausea and side effects, as well. However day 11 of cycle 5 hit us like a ton of bricks. We had a wonderful day as a family, but while getting ready for bed, Noah began to complain of a headache, his legs hurting, the light bothering him, and shortly afterwards, his whole body began to shake. We took his temperature, and it was 102.3 and rising. Per the on-call doctor's orders, we rushed him to the OR. This was overwhelming and scary all at the same time, and Covid just added another level of fear and complexity to everything.
The ER handled our situation with care and caution, as they got Noah back to a room immediately without having to even stand in the waiting room. They drew 4 vials of blood.. some of the results came quickly, and others required some waiting. His hemoglobin had dropped to 6.3 (anything below 7 is unsafe), so they gave him a blood transfusion as quickly as they could. His ANC was 620 (moderately at risk for infection--anything below 500 is severe risk) and white blood cell count was 1-->he was neutropenic. The doctors told Jason he needed to be put on 2 broad-spectrum antibiotics to fight off risk of infection and sepsis.
In the middle of the night, the blood cultures that they had drawn when he first arrived came back. They showed that he already had an infection in his blood. They drew more blood to be able to test antibiotics and determine what type of infection he had. His platelet count also dropped which meant that he needed a platelet transfusion the next morning. All while this was happening, they were struggling to get his fever down. It continued to spike and Tylenol was NOT doing anything. Once it hit 105.8, they covered his body in ice. It took about 3 hours to bring his fever down, but it finally dropped below 99.0. After the platelet transfusion, his levels began to rise slowly over the next couple of days. However, his fever spiked two more times over the next 2 days.
Noah was also still having an awful time with his leg pain behind both knees. He was struggling to stand or put any pressure on them, and he spent a lot of time crying because of it. Fast forward to today, we now know that he was experiencing a side effect (neuropathy) from one of his chemo medications. I will touch on that more in a bit.
The blood cultures came back in waves, and each time they came back, they showed more detail about the infections and more infections appeared. He ended up have 3 different infections in his blood and had to be put on 3 antibiotics. I learned that they take the blood and put it in different wells in the lab and put different antibiotics on it to see which ones are the most effective for treating the infections. Based on the daily blood draws, they determined that the infection was stemming from his PICC line in his arm. Once they made that determination, they removed the line pretty quickly. Unfortunately, this meant that Noah had to be poked with needles daily for blood draws. They blew 2 veins in his arms which was incredibly painful for Noah. They also found that 1 of the infections they found was antibiotic resistant. Protocol through Nemours and Wolfson's hospital states that any hospital staff who enters the room must be fully gowned and gloved... this was super overwhelming for Noah and me.
Once the PICC line was out, things began to improve--Noah's mood, his numbers, fevers, and appetite. After giving him antibiotics for another 5 days, they scheduled Noah for a new PICC line to be put in so they could do the remainder of chemo. While in surgery, they found that he had a blocked vein in his right arm which they are assuming is scar tissue from the last PICC line. This required them to go into his left arm instead. He was pretty sore for the next day or so from all the needles and where they put the line in. We were able to go home 8 days after we first arrived at the hospital, but we had to come home with 10 days of IV antibiotics that Jason and I had to give to Noah FIVE times daily. Let me repeat that FIVE TIMES DAILY! It was exhausting trying to stay on top of taking the meds out of the refrigerator so they could come to room temperature and hooking him up to the antibiotics and then removing the antibiotics and hep-locking him.
After 5 days at home, Noah came in our room in the middle of the night 2 days in a row screaming about the frogs that were everywhere. It sounds funny when you read it, but the fear in his eyes and the tension in his body was so awful to see. He had a pretty uncommon side effect from one of his 2 antibiotics and was hallucinating. He felt frogs and bugs crawling all over him, and he could see them all over the floor and our beds. The doctors had us stop the antibiotics, which helped with the hallucinations.
It did not, however, help with the pure panic and fear that was now in Noah's mind. Noah is afraid to sleep in his room alone, he is afraid to have any lights off, and even just closing his eyes scares him. He wakes up multiple times during the night, crying in fear. We know that this will slowly get better with time, but it is devastating to see him have such huge fears at this age, and it is also EXHAUSTING to not sleep for 5 nights in a row.
In addition to the fear, the FEELINGS of bugs and frogs on his legs or the pain in his legs did not go away at all. This led to us finding out that the pain and tingling in his legs was neuropathy. He was put on a medication for that 3 times a day to help with the sensations. We are still working on figuring out the correct dosage of that, so there is definitely residual pain and discomfort. Unfortunately, the medication for this also caused Noah to have insomnia. I'm not talking about the type of insomnia where kids wake up often. I'm talking about staying awake and playing all night while everyone else is asleep. He is now on another medication to help him sleep. It breaks my heart to see his sweet innocent body being exposed to all these medications.
This brings us to now. We are in the hospital for his sixth and FINAL round of in-patient chemo treatments. It is so exciting to know that we are just around the corner from the end. Noah has been pretty exhausted the last 2 days in the hospital, and he is having some pretty intense mood swings. That could be from any of the multiple medications that he is on. After we leave the hopsital on Sunday, we will have 3 more doctor's appointments to check his blood levels. Then, he will have a CT and PET scan (not positive when these are yet). Once these are complete, he will be able to have his PICC line removed, and we will move to a new schedule for appointments and scans. He will not be considered in remission for 2 years, but I cannot tell you how amazing it will feel to hear the doctor say that there is no cancer in his body and that he is DONE with chemo.
Prayer requests:
- Healing of Noah's neuropathy in his legs--no more pain or tingling sensations at all
- That his blood counts stay in a safe range and that his levels bounce back quickly from the chemo
- Completely clear PET and CT scans
- Joy in my sweet boy's heart and no more fear in his mind
- Rest for our entire family
- For our family to experience a sense of normalcy for the first time ever
- Peace in moving forward and no fear of cancer returning
- That this cancer is gone FOREVER!
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