Yesterday, Collin had another MRI to check his progress, and another lumbar puncture to make sure his CSF is still free of any cancer cells. A foley catheter was also placed while he was sedated so that his urine could be collected for 24 hours; the results of a creatinine clearance test will help the oncologist dose his upcoming chemo properly.
Today, Collin had another hearing test to monitor the effects of chemo on his hearing, and then we went to the clinic to have the catheter removed, return the consent forms for the upcoming hospital admission, and get the MRI results. The hearing test went very well, better than I expected; it showed Collin's hearing to be within normal limits in BOTH ears! Following the tumor resection, and up until today's test, his right ear has always shown some slight low frequency hearing loss, so I was very surprised to have different results today! The LP showed no signs of cancer cells in the CSF, which is what we expected. Then, the MRI showed "normal post-operative changes" and no evidence of disease! So, Collin is cleared for the next step in his treatment, the high dose chemo and the stem cell rescue. Our oncologist didn't expect anything less on the MRI, but if for some reason results would have been different, she said they couldn't go ahead with the next step, and we'd be having a different discussion. So we got the best results we could have hoped for all around today! It has certainly boosted my spirits!
This evening I had so much fun just watching Neya and Collin play together. They always have so much fun together, and it's always such a nice thing to see! The next few days will be busy with therapy appointments, and cleaning and packing the things we will take to the hospital. I'm making peace with the fact that I will get done what I can, and others will help with what I can't. We are so blessed to have so many wonderful people surrounding us! I have always said I never realized how many wonderful people my kids would bring into my life, and it still holds true!
Wednesday, September 29, 2010
Sunday, September 26, 2010
Sunday, September 26
I spent the weekend cleaning the house, as it has to be cleaned very thoroughly for Collin to come home to after his next hospitalization. Saturday, Neya and I cleaned the basement playroom, and then I packed up any of Collin's toys from the living room that can't be easily wiped clean. I also thoroughly cleaned the refrigerator. Today, Neya and I cleaned her and Collin's bedrooms, dusting everything and vacuuming floors, curtains, and stuffed animals. Bill and I moved the washer and dryer to clean around and under them, and then I cleaned the insides as well so I can start washing all of the clothes that we will bring to the hospital. There is a lot more to do to get the house ready, and there's no way I will be able to get it all done by myself before going to the hospital next Monday; thankfully we will have help from family and friends over the next few weeks to get everything ready for Collin's homecoming. It's hard to ask for help with things I am used to doing myself, and the words "thank you" will never be enough. We are blessed to have such wonderful people in our lives!
Tomorrow, everyone has the opportunity to help find a cure for pediatric cancer by eating at Chili's. All day on Monday, September 27th, Chili's restaurant will donate 100% of their proceeds to St. Judes Hospital for cancer research. This is ANY Chili's in the U.S.! What a great reason to get out of cooking for the night, or get friends together for lunch. It is a fun and easy way to help make a difference for these children!
Tomorrow, everyone has the opportunity to help find a cure for pediatric cancer by eating at Chili's. All day on Monday, September 27th, Chili's restaurant will donate 100% of their proceeds to St. Judes Hospital for cancer research. This is ANY Chili's in the U.S.! What a great reason to get out of cooking for the night, or get friends together for lunch. It is a fun and easy way to help make a difference for these children!
Wednesday, September 22, 2010
Wednesday, September 22
Collin was diagnosed five months ago today. In some ways I can't believe it's already been that long, and in others it feels like this journey has barely begun and that there is still such a long road ahead. Today we met with Collin's oncologist to learn about the upcoming round of chemo and the transplant. Tonight I am exhausted and overwhelmed. We learned about what to expect medically during the next round-the drugs, the side effects, the risks, etc. We also were given an idea of the things we'll have to do to prepare for admission to the hospital, but since I now have a meeting tomorrow where I will be given another binder full of information and details, I won't go into that stuff until tomorrow.
Collin will be admitted to the hospital in the afternoon on October 4, which is known as day -9. On that day he will receive intravenous gammaglobulin (IVIg), which is a blood plasma product that helps boost the body's immune system. The first time he received IVIg he had a very scary reaction during the infusion, but since then it is infused very slowly and he has had no problems.
Over the next three days (days -8, -7, and -6) he will receive the chemo drug Carboplatin, which will be infused over four hours each day. At high doses this drug can cause deterioration in hearing or kidney function, as well as deterioration in liver function. These side effects are rare; however it does cause nausea, vomiting, and diarrhea.
Over days -5, -4, and -3 he will receive two drugs, Thiotepa and VP-16, aka Etoposide. Thiotepa may cause mucositis resulting in mouth sores, inability to eat, and diarrhea. It will also cause temporary nausea and vomiting as well as loss of apetite. It causes temporary darkening of the skin with redness, soreness, and skin sloughing in some areas such as the buttocks, groin, back and armpits. This can last up to a month. Unlike the other chemo drugs that are excreted through the urine, the Thiotepa is excreted through the skin, so for the three days it is given and the two days following the last dose, Collin will need to be bathed every six hours. That is twenty baths in five days. Every time he is bathed, his clothing and bed linens will need to be changed as well. We will have to wash our hands before and after we touch him, and wear gloves to handle any bodily fluids. The VP-16, which Collin has had before, will also contribute to the mucositis, and can cause low blood pressure.
These three drugs together are expected to cause severe mucositis. Almost every patient who receives this therapy will be unable to eat and require IV nutrition and narcotics. The mucositis could potentially be so severe that the patient would need to be intubated to protect the airway, but the oncologist said she has only seen that happen once. The combination of the three drugs at high doses can also cause a form of liver damage, but they try to prevent this complication with the use of a low dose heparin drip and very close attention to fluid balance, and the oncologist does not expect this complication to occur. The drug regimen can also lead to multi organ system failure which is usually fatal, but this complication has almost been completely eliminated through modifications of the drug doses related to kidney function. Next week when Collin has his next MRI, he will receive a catheter through which we will do a 24 hour urine collection to test his kidney function. This test and a blood test will help them dose the chemo properly for Collin to prevent this outcome.
Days -2 and -1 are days of rest between the chemo and the transplant, to ensure that the healthy stem cells are not introduced into a toxic environment and damaged.
On day 0, October 13, Collin's stem cells that were collected on Memorial Day will be transplanted back into his body. The stem cells have been preserved and frozen, and will be thawed at his bedside and infused over an hour. Rarely the infusion of peripheral stem cells can result in breathing difficulties from clumps of cells being trapped in the lungs. Many patients get nauseated during the infusion from the preservative used in storing the stem cells. On day +1, another infusion of stem cells can be given if needed, but the oncologist doesn't think it will be necessary. The remaining stem cells will be kept frozen for up to ten years, in case Collin needs them in the future.
Day -1 to day +7 to +10 is called the Aplastic Phase. Collin's white blood cell count will be 0, there will be severe mucositis, and he will need multiple blood and platelet transfusions to minimize bleeding from the mouth and gut. He will need morphine to control pain, and nutrition will be provided intravenously. He will be at very high risk of infections.
Day +7 to day +21 is the Recovery Phase. New cells will begin to grow and the WBC count will begin to rise. The mucositis in the mouth and gut will heal. Antibiotics will be discontinued and the need for pain meds will stop. He will begin to eat again. Most patients are discharged from the hospital during this time. Before Collin comes back home, the house will need to be cleaned thoroughly, carpets cleaned, furnace filter cleaned, etc. We will need to replace the air filter in our car, and only re-circulate the air in the car, not draw in outside air. There is probably much more to this that I will learn about tomorrow.
Day +21 to day +100 is the Outpatient Recovery phase. Collin will continue to make progress and will be followed as an outpatient. His immune system will be quite immature and the risk of infection is high. At some point he will most likely be readmitted to the hospital with a fever. Because his immune system will be so vulnerable, he will need to stay in relative isolation, only leaving the house for medical appointments. He will need to wear a mask when he leaves the house. He cannot be around anyone who is sick, or has been in contact with someone who is sick. He cannot be around anyone who has recently had a live vaccine, or anyone who hasn't been vaccinated. He cannot be around anyone who has shingles or chicken pox, as this could be life threatening. We have to move houseplants to an area he will not spend time in. Fresh flowers, fruit baskets, etc. will not be permitted in the house because of risk of bacterial infections. His food will need to be freshly prepared; he cannot have restaurant food that would have been handled by multiple people. We will most likely have Bailey stay with his cousin for a while so that he can't lick Collin. We won't be able to attend the activites that lead up to THON, but his doctor feels that by February he will be safe to attend THON. There are many more rules and precautions we will need to follow that I will learn about tomorrow.
The oncologist also told us today that once Collin doesn't need blood transfusions and frequent lab draws, his Broviac will be removed because it is a constant risk of infection. She said she is considering keeping him on maintenance chemo for six months once his counts have recovered to hopefully help prevent relapse. Since the chemo would need to be administered intravenously, she would put in a mediport, which is an appliance placed in the chest under the skin through which chemo can be given and blood draws can be done with less pain than a typical needle stick, and it has a lower risk of infection.
I'm sure there is information from today that I have forgotten to include tonight, and I know I'll be getting a lot more information tomorrow. It is a lot to digest and wrap my head around, and I'm exhausted. The thought of Collin being as sick as he was during the first two rounds of chemo, or having to go through Morphine withdrawal again, or losing interest in food after we've worked to restore his interest in eating breaks my heart. No child should have to endure this, and no parent should have to watch their child suffer.
Collin will be admitted to the hospital in the afternoon on October 4, which is known as day -9. On that day he will receive intravenous gammaglobulin (IVIg), which is a blood plasma product that helps boost the body's immune system. The first time he received IVIg he had a very scary reaction during the infusion, but since then it is infused very slowly and he has had no problems.
Over the next three days (days -8, -7, and -6) he will receive the chemo drug Carboplatin, which will be infused over four hours each day. At high doses this drug can cause deterioration in hearing or kidney function, as well as deterioration in liver function. These side effects are rare; however it does cause nausea, vomiting, and diarrhea.
Over days -5, -4, and -3 he will receive two drugs, Thiotepa and VP-16, aka Etoposide. Thiotepa may cause mucositis resulting in mouth sores, inability to eat, and diarrhea. It will also cause temporary nausea and vomiting as well as loss of apetite. It causes temporary darkening of the skin with redness, soreness, and skin sloughing in some areas such as the buttocks, groin, back and armpits. This can last up to a month. Unlike the other chemo drugs that are excreted through the urine, the Thiotepa is excreted through the skin, so for the three days it is given and the two days following the last dose, Collin will need to be bathed every six hours. That is twenty baths in five days. Every time he is bathed, his clothing and bed linens will need to be changed as well. We will have to wash our hands before and after we touch him, and wear gloves to handle any bodily fluids. The VP-16, which Collin has had before, will also contribute to the mucositis, and can cause low blood pressure.
These three drugs together are expected to cause severe mucositis. Almost every patient who receives this therapy will be unable to eat and require IV nutrition and narcotics. The mucositis could potentially be so severe that the patient would need to be intubated to protect the airway, but the oncologist said she has only seen that happen once. The combination of the three drugs at high doses can also cause a form of liver damage, but they try to prevent this complication with the use of a low dose heparin drip and very close attention to fluid balance, and the oncologist does not expect this complication to occur. The drug regimen can also lead to multi organ system failure which is usually fatal, but this complication has almost been completely eliminated through modifications of the drug doses related to kidney function. Next week when Collin has his next MRI, he will receive a catheter through which we will do a 24 hour urine collection to test his kidney function. This test and a blood test will help them dose the chemo properly for Collin to prevent this outcome.
Days -2 and -1 are days of rest between the chemo and the transplant, to ensure that the healthy stem cells are not introduced into a toxic environment and damaged.
On day 0, October 13, Collin's stem cells that were collected on Memorial Day will be transplanted back into his body. The stem cells have been preserved and frozen, and will be thawed at his bedside and infused over an hour. Rarely the infusion of peripheral stem cells can result in breathing difficulties from clumps of cells being trapped in the lungs. Many patients get nauseated during the infusion from the preservative used in storing the stem cells. On day +1, another infusion of stem cells can be given if needed, but the oncologist doesn't think it will be necessary. The remaining stem cells will be kept frozen for up to ten years, in case Collin needs them in the future.
Day -1 to day +7 to +10 is called the Aplastic Phase. Collin's white blood cell count will be 0, there will be severe mucositis, and he will need multiple blood and platelet transfusions to minimize bleeding from the mouth and gut. He will need morphine to control pain, and nutrition will be provided intravenously. He will be at very high risk of infections.
Day +7 to day +21 is the Recovery Phase. New cells will begin to grow and the WBC count will begin to rise. The mucositis in the mouth and gut will heal. Antibiotics will be discontinued and the need for pain meds will stop. He will begin to eat again. Most patients are discharged from the hospital during this time. Before Collin comes back home, the house will need to be cleaned thoroughly, carpets cleaned, furnace filter cleaned, etc. We will need to replace the air filter in our car, and only re-circulate the air in the car, not draw in outside air. There is probably much more to this that I will learn about tomorrow.
Day +21 to day +100 is the Outpatient Recovery phase. Collin will continue to make progress and will be followed as an outpatient. His immune system will be quite immature and the risk of infection is high. At some point he will most likely be readmitted to the hospital with a fever. Because his immune system will be so vulnerable, he will need to stay in relative isolation, only leaving the house for medical appointments. He will need to wear a mask when he leaves the house. He cannot be around anyone who is sick, or has been in contact with someone who is sick. He cannot be around anyone who has recently had a live vaccine, or anyone who hasn't been vaccinated. He cannot be around anyone who has shingles or chicken pox, as this could be life threatening. We have to move houseplants to an area he will not spend time in. Fresh flowers, fruit baskets, etc. will not be permitted in the house because of risk of bacterial infections. His food will need to be freshly prepared; he cannot have restaurant food that would have been handled by multiple people. We will most likely have Bailey stay with his cousin for a while so that he can't lick Collin. We won't be able to attend the activites that lead up to THON, but his doctor feels that by February he will be safe to attend THON. There are many more rules and precautions we will need to follow that I will learn about tomorrow.
The oncologist also told us today that once Collin doesn't need blood transfusions and frequent lab draws, his Broviac will be removed because it is a constant risk of infection. She said she is considering keeping him on maintenance chemo for six months once his counts have recovered to hopefully help prevent relapse. Since the chemo would need to be administered intravenously, she would put in a mediport, which is an appliance placed in the chest under the skin through which chemo can be given and blood draws can be done with less pain than a typical needle stick, and it has a lower risk of infection.
I'm sure there is information from today that I have forgotten to include tonight, and I know I'll be getting a lot more information tomorrow. It is a lot to digest and wrap my head around, and I'm exhausted. The thought of Collin being as sick as he was during the first two rounds of chemo, or having to go through Morphine withdrawal again, or losing interest in food after we've worked to restore his interest in eating breaks my heart. No child should have to endure this, and no parent should have to watch their child suffer.
Tuesday, September 21, 2010
Tuesday, September 21
I can't believe we've been home a week already! Last Wednesday, a nurse came to the house to draw labs, and by the end of the day I had received a call from a nurse at the clinic saying that Collin's counts were high enough that we didn't have to give any more Neupogen injections. But because of the Neupogen the night before, Collin was miserable Wednesday night, so Collin, Bill and I didn't get much sleep. I tried giving him a dose of Tylenol for the pain, but it didn't make a difference. I ended up giving him a dose of Morphine Wednesday night, and then a few more throughout the day Thursday. Thankfully he slept much better Thursday night, and was more like himself by Friday. Since then, he has enjoyed being home, playing with Neya, seeing her off at the bus stop in the morning and picking her up from school in the afternoon, playing with his toys, and watching videos of kid's songs on You Tube with Bill. Last Saturday Collin turned 21months old, and the four of us took advantage of the beautiful weather and took a nice long walk. We stopped at the park and thought we'd see if Collin would enjoy some time on the swings, but he wanted no part of them. Since I'm not sure what he sees, I wondered if his vision was part of the problem; if I had double vision, I don't think swinging would make me feel very well. So, we gave up on that, put him back in the stroller, and kept walking, which he enjoyed. We also decided to become a Penn State THON family, to help raise money for Childhood Cancer Research, and we are looking forward to experiencing THON in February as long as Collin is healthy enough to attend.
Today, Collin had an outpatient PT eval. His therapist noticed improvement since the last time she saw him. The session went very well, and Collin worked very hard. He did a lot of leaning and reaching, pulling himself up to stand, playing while standing at a surface, and walking pushing a toy grocery cart. He requires less assistance with standing and walking; now when he walks his steps are much more controlled, and he supports his own weight. We just help him steer the push toy or walker, and help prevent it from getting away from him. If he walks holding on to my hands, I'm really just there for reassurance; he walks and supports himself, I'm not holding him up (at least until he gets fatigued). He will have a few more outpatient PT visits before he is readmitted on Oct. 4, and he has an outpatient OT eval next week.
Tomorrow we meet with the oncologist to discuss the high dose chemo and stem cell transplant, and to sign consent forms for everything. I'm nervous, both about the meeting tomorrow, and the admission in October. I'm not looking forward to going back to the hospital and being separated as a family for another length of time. I don't want to see Collin sick again, or come down with another infection. I'm enjoying the little things, like being able to open the windows and breathe fresh air, hear the birds, etc. I've never been this tired in my life, physically, mentally, or emotionally, and finding the stamina to get through the next round is going to be a challenge. I guess in a way it's like running a marathon; you have to push yourself to keep going even when you think you can't continue. Yesterday, we received a special gift from an amazing person who heard of Collin through a friend. This person is a runner, and just ran a half marathon a few days ago with the Leukemia & Lymphoma Society Team. She had pictures of some very special kids in whose honor she was running pinned on her jersey, including Collin, and those photos inspired her and many other wonderful people to keep running and complete the marathon. Yesterday, we received an envelope from her, and in it was a beautiful card, and her medal from the marathon! She sent her medal to Collin, and said he was a hero and an inspiration. I am so touched by this, and I will bring that medal to the hospital and hang it on Collin's bed, as a symbol of his strength and so that I can look at it every day and be inspired by the strength and love of others. When he is old enough to understand, I will make sure he knows how special that medal is!
Today, Collin had an outpatient PT eval. His therapist noticed improvement since the last time she saw him. The session went very well, and Collin worked very hard. He did a lot of leaning and reaching, pulling himself up to stand, playing while standing at a surface, and walking pushing a toy grocery cart. He requires less assistance with standing and walking; now when he walks his steps are much more controlled, and he supports his own weight. We just help him steer the push toy or walker, and help prevent it from getting away from him. If he walks holding on to my hands, I'm really just there for reassurance; he walks and supports himself, I'm not holding him up (at least until he gets fatigued). He will have a few more outpatient PT visits before he is readmitted on Oct. 4, and he has an outpatient OT eval next week.
Tomorrow we meet with the oncologist to discuss the high dose chemo and stem cell transplant, and to sign consent forms for everything. I'm nervous, both about the meeting tomorrow, and the admission in October. I'm not looking forward to going back to the hospital and being separated as a family for another length of time. I don't want to see Collin sick again, or come down with another infection. I'm enjoying the little things, like being able to open the windows and breathe fresh air, hear the birds, etc. I've never been this tired in my life, physically, mentally, or emotionally, and finding the stamina to get through the next round is going to be a challenge. I guess in a way it's like running a marathon; you have to push yourself to keep going even when you think you can't continue. Yesterday, we received a special gift from an amazing person who heard of Collin through a friend. This person is a runner, and just ran a half marathon a few days ago with the Leukemia & Lymphoma Society Team. She had pictures of some very special kids in whose honor she was running pinned on her jersey, including Collin, and those photos inspired her and many other wonderful people to keep running and complete the marathon. Yesterday, we received an envelope from her, and in it was a beautiful card, and her medal from the marathon! She sent her medal to Collin, and said he was a hero and an inspiration. I am so touched by this, and I will bring that medal to the hospital and hang it on Collin's bed, as a symbol of his strength and so that I can look at it every day and be inspired by the strength and love of others. When he is old enough to understand, I will make sure he knows how special that medal is!
Tuesday, September 14, 2010
Tuesday, September 14
This morning the nurse practitioner surprised us with the news that we could go home today! Collin's counts had come up significantly overnight, so they felt we could safely return home. We have to give IV and oral antibiotics twice a day to get rid of the infections Collin has, and Bill gave the Neupogen shot tonight-he's a pro at it! It is so nice to be home!
Monday, September 13, 2010
Monday, September 13
This morning I found out that one of the infections Collin has is a urinary tract infection called pseudomonas, which is probably the one that caused the high fever and rigors Saturday morning. One of the broad spectrum antibiotics, Cefepime, will treat it, but it also requires another antibiotic, Ciprofoxacin, aka Cipro. The other infection is strep veridans, which the other broad spectrum antibiotic Vancomycin is treating. Because this is not the first UTI Collin has had, a renal ultrasound was done today to make sure there is no blockage or other anatomical reason for the UTIs. Luckily the ultrasound was normal. An echocardiogram was also scheduled for this afternoon to take a look at Collin's cardiac function in preparation for his final round of chemo and stem cell rescue. Collin was great for both the renal ultrasound and the EKG; he layed still and cooperated for both tests. He really is a trooper! The EKG showed no problems with his heart. Between the two tests, and a PT session where Collin worked very hard walking and going up and down steps, the day was very tiring; poor Collin was overtired tonight and took a while to settle enough to go to sleep. Hopefully he will get a good nights sleep tonight-he definitely needs it!
If all goes well, it looks like we may be discharged by the end of this week. It will be nice to have a little more time at home before the final round; it looks like Collin will be admitted for that on October 4...
If all goes well, it looks like we may be discharged by the end of this week. It will be nice to have a little more time at home before the final round; it looks like Collin will be admitted for that on October 4...
Sunday, September 12, 2010
Sunday, September 12
It's been a week since I've updated the blog, so here's a review of the last week...
Last Sunday (Sept. 5) Collin had a mid-morning nap courtesy of the Benadryl and Reglan combination he was receiving to help prevent nausea from the chemo. Again when he woke up from the nap, he immediately started screaming and crying, in a way that is not normal for him. We tried giving a dose of oral Morphine to see if he was in pain, but it didn't help calm him at all. Half an hour later we gave a dose of Ativan, and he calmed down right away. That afternoon, he had the Benadryl/Reglan combination again, but he didn't go to sleep, and he had no more screaming episodes. The pattern that day followed the same pattern as the day before, and I really began to question whether the Reglan caused some sort of disturbance in his sleep cycle that caused him to wake up screaming; the episodes were similar to the night terrors that Neya used to have when she was around the same age. Reglan can cause some pretty bizarre side effects which is why it's given with Benadryl, but I think we'll try not to use it during the next round of chemo. There are other drugs that can be used to prevent nausea instead, so it's not worth the risks.
Monday, Labor Day, was quiet, other than having to replace Collin's feeding tube after it was accidentally pulled out during a vigorous game of Pekaboo between Collin and Neya. Tuesday was another quiet day. Collin's ANC was pretty high, which the attending physician explained was because the Neupogen had caused Collin's bone marrow to push out all of the blood cells that it had been manufacturing. She told me his counts would go down to zero by the next day or so, as expected.
By Wednesday (Sept. 8), the mucositis had started; Collin's breathing sounded kind of junky the night before, and his voice was sounding hoarse. Luckily he only spit up mucous a few times during the day. Then, around 4:00 Thursday morning, Collin threw up, and it was a large enough amount that I had to change him and the bed sheets. Later Thursday he threw up a few more times because of the mucous in his throat. He also received a blood transfusion Thursday because his Hemoglobin was low. Friday I put a mask on Collin and got him out of the room for a while. We were able to go down to the gym for OT; he had a great therapy session and enjoyed getting out of the room for a while.
Saturday morning, around 3:00 AM, Collin's fever spiked like it always does when his immune system reaches zero. His temp was 102.6, so blood cultures and a chest X-Ray were done to check for infection, and he was started on Tylenol and two broad spectrum antibiotics to treat any infection that was brewing. Around 7:00 AM, Collin developed rigors (violent shivering) and threw up; I called for our nurse and checked Collin's temp with my ear thermometer, which read 105. He was immediately given another dose of Tylenol, which thankfully brought his fever down pretty quickly. The doctors explained that sometimes the first dose of antibiotics can cause an inflammatory reaction in the body, which causes another spike in temp. Later I was told that the cultures showed that there was indeed not one but two infections in Collin's blood. He also had another blood transfusion Saturday because his Hemoglobin was still low. Saturday night, one lumen of his Broviac was clogged, and required treatment with TPA, a drug that breaks up blood clots. Most likely the line wasn't flushed well enough after the blood transfusion, which allowed some blood to clot in the line. The TPA had to sit in the lumen for almost three hours, but thankfully it eventually unclogged the line.
Sunday was a quieter day, and Collin seemed to feel a bit better. His breathing sounded clearer, but his voice still sounded a bit hoarse from the mucositis. He received a transfusion of platelets in the morning. He only threw up once; of course it was just after I had finished bathing and dressing him for bed Sunday evening, so I ended up having to do it all over again, and then change the bedding as well.
Last Sunday (Sept. 5) Collin had a mid-morning nap courtesy of the Benadryl and Reglan combination he was receiving to help prevent nausea from the chemo. Again when he woke up from the nap, he immediately started screaming and crying, in a way that is not normal for him. We tried giving a dose of oral Morphine to see if he was in pain, but it didn't help calm him at all. Half an hour later we gave a dose of Ativan, and he calmed down right away. That afternoon, he had the Benadryl/Reglan combination again, but he didn't go to sleep, and he had no more screaming episodes. The pattern that day followed the same pattern as the day before, and I really began to question whether the Reglan caused some sort of disturbance in his sleep cycle that caused him to wake up screaming; the episodes were similar to the night terrors that Neya used to have when she was around the same age. Reglan can cause some pretty bizarre side effects which is why it's given with Benadryl, but I think we'll try not to use it during the next round of chemo. There are other drugs that can be used to prevent nausea instead, so it's not worth the risks.
Monday, Labor Day, was quiet, other than having to replace Collin's feeding tube after it was accidentally pulled out during a vigorous game of Pekaboo between Collin and Neya. Tuesday was another quiet day. Collin's ANC was pretty high, which the attending physician explained was because the Neupogen had caused Collin's bone marrow to push out all of the blood cells that it had been manufacturing. She told me his counts would go down to zero by the next day or so, as expected.
By Wednesday (Sept. 8), the mucositis had started; Collin's breathing sounded kind of junky the night before, and his voice was sounding hoarse. Luckily he only spit up mucous a few times during the day. Then, around 4:00 Thursday morning, Collin threw up, and it was a large enough amount that I had to change him and the bed sheets. Later Thursday he threw up a few more times because of the mucous in his throat. He also received a blood transfusion Thursday because his Hemoglobin was low. Friday I put a mask on Collin and got him out of the room for a while. We were able to go down to the gym for OT; he had a great therapy session and enjoyed getting out of the room for a while.
Saturday morning, around 3:00 AM, Collin's fever spiked like it always does when his immune system reaches zero. His temp was 102.6, so blood cultures and a chest X-Ray were done to check for infection, and he was started on Tylenol and two broad spectrum antibiotics to treat any infection that was brewing. Around 7:00 AM, Collin developed rigors (violent shivering) and threw up; I called for our nurse and checked Collin's temp with my ear thermometer, which read 105. He was immediately given another dose of Tylenol, which thankfully brought his fever down pretty quickly. The doctors explained that sometimes the first dose of antibiotics can cause an inflammatory reaction in the body, which causes another spike in temp. Later I was told that the cultures showed that there was indeed not one but two infections in Collin's blood. He also had another blood transfusion Saturday because his Hemoglobin was still low. Saturday night, one lumen of his Broviac was clogged, and required treatment with TPA, a drug that breaks up blood clots. Most likely the line wasn't flushed well enough after the blood transfusion, which allowed some blood to clot in the line. The TPA had to sit in the lumen for almost three hours, but thankfully it eventually unclogged the line.
Sunday was a quieter day, and Collin seemed to feel a bit better. His breathing sounded clearer, but his voice still sounded a bit hoarse from the mucositis. He received a transfusion of platelets in the morning. He only threw up once; of course it was just after I had finished bathing and dressing him for bed Sunday evening, so I ended up having to do it all over again, and then change the bedding as well.
Sunday, September 5, 2010
Sunday, September 5
I spent today feeling pretty depressed. I know Collin seems to be responding very well to treatment, and he is making great progress in his recovery every day. I am truly grateful for how well he's doing. But I am also terrified. I'm terrified of losing him, and I'm terrified of a future without him. Just because he is doing well now doesn't mean the cancer won't come back. So far there is no guaranteed cure for Medulloblastoma, or any childhood cancer.
Here are some facts about childhood cancer:*
~Childhood cancers are the #1 disease killer of children in the U.S. - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
~Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
~Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
~Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
~Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
~The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
~One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
~On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
~While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
~Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
~Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is still elusive.
~Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
*(Facts taken from THON's website.)
Everyone knows that a pink ribbon stands for Breast Cancer Awareness, but did you know that a gold ribbon stands for Childhood Cancer Awareness? Millions of dollars are donated to Breast Cancer Research every year. Childhood Cancer Research deserves the same level of recognition and response. September is Childhood Cancer Awareness Month, so I am asking you to help make a difference in the lives of children who are diagnosed with cancer. Consider making a donation toward Childhood Cancer Research at one of these organizations:
Make a donation. Spread the word. Share the links. Help make a difference.
Here are some facts about childhood cancer:*
~Childhood cancers are the #1 disease killer of children in the U.S. - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
~Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
~Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
~Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
~Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
~The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
~One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
~On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
~While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
~Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
~Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is still elusive.
~Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
*(Facts taken from THON's website.)
Everyone knows that a pink ribbon stands for Breast Cancer Awareness, but did you know that a gold ribbon stands for Childhood Cancer Awareness? Millions of dollars are donated to Breast Cancer Research every year. Childhood Cancer Research deserves the same level of recognition and response. September is Childhood Cancer Awareness Month, so I am asking you to help make a difference in the lives of children who are diagnosed with cancer. Consider making a donation toward Childhood Cancer Research at one of these organizations:
Make a donation. Spread the word. Share the links. Help make a difference.
Saturday, September 4, 2010
Saturday, September 4
Friday, September 3-Round 5, Day 3
Collin woke up fussing at 2:20 Friday morning. I changed his diaper (with all of the fluids that he gets all night, his diapers have to be changed regularly through out the night) but he still didn't go back to sleep. I layed down next to him, and every time I opened my eyes, he was laying there with his eyes open. Then around 3:20 he threw up. The nurse gave him his next dose of Benadryl and Reglan for the nausea, and I cleaned him up and tried to calm his tears, but it took about another hour for him to get back to sleep. He was fussy and cried a lot throughout the day. In the afternoon, I questioned whether his gums could be bothering him, so he had a dose of Tylenol, but it didn't seem to help. Then we tried a small dose of Ativan which can help with nausea; it's difficult to know what was bothering him since he can't tell me. The Ativan did seem to help him feel better. Friday night he received Methotrexate, the last dose of chemo for this round.
Saturday, September 4
Collin had another fussy, tearful morning this morning. He seemed eager for breakfast when it came, but then he didn't eat much. After breakfast, I got him dressed and ready for the day, and then he cuddled up on my lap and went to sleep. He napped for quite a while, and then when he woke up, he cried and cried, and was difficult to console. He eventually calmed down, but when I put him into his highchair for lunch, he gagged and spit up. I asked the nurse for another dose of Ativan, and then he seemed to feel better and was able to eat some lunch. This afternoon we took him for a ride around the hospital in the little blue car he liked so much the last time we were here. He seemed to enjoy it for the most part; he really likes going for elevator rides, and points to them every time we pass by them. Tonight he is resting pretty well so far, and is receiving Leucovorin, the rescue agent for the Methotrexate.
Collin woke up fussing at 2:20 Friday morning. I changed his diaper (with all of the fluids that he gets all night, his diapers have to be changed regularly through out the night) but he still didn't go back to sleep. I layed down next to him, and every time I opened my eyes, he was laying there with his eyes open. Then around 3:20 he threw up. The nurse gave him his next dose of Benadryl and Reglan for the nausea, and I cleaned him up and tried to calm his tears, but it took about another hour for him to get back to sleep. He was fussy and cried a lot throughout the day. In the afternoon, I questioned whether his gums could be bothering him, so he had a dose of Tylenol, but it didn't seem to help. Then we tried a small dose of Ativan which can help with nausea; it's difficult to know what was bothering him since he can't tell me. The Ativan did seem to help him feel better. Friday night he received Methotrexate, the last dose of chemo for this round.
Saturday, September 4
Collin had another fussy, tearful morning this morning. He seemed eager for breakfast when it came, but then he didn't eat much. After breakfast, I got him dressed and ready for the day, and then he cuddled up on my lap and went to sleep. He napped for quite a while, and then when he woke up, he cried and cried, and was difficult to console. He eventually calmed down, but when I put him into his highchair for lunch, he gagged and spit up. I asked the nurse for another dose of Ativan, and then he seemed to feel better and was able to eat some lunch. This afternoon we took him for a ride around the hospital in the little blue car he liked so much the last time we were here. He seemed to enjoy it for the most part; he really likes going for elevator rides, and points to them every time we pass by them. Tonight he is resting pretty well so far, and is receiving Leucovorin, the rescue agent for the Methotrexate.
Thursday, September 2, 2010
Thursday, September 2
Collin and I definitely enjoyed our short time at home. We did a lot of laughing, and spent as much time together as a family as we could. Monday August 30 was Neya's first day of first grade, and Collin was so excited to go see the big yellow bus when I told him we were taking Neya to the bus stop that he wouldn't eat any more breakfast; he pointed to the door and wanted to leave right away! After we waved goodbye to the bus, we went to Collin's clinic appointment where they took vitals and drew labs for his readmission to the hospital the next day. His weight was up to 25 pounds, which is the highest it's ever been! He's been eating well; he seems to be eating the amount he used to before he got sick. Granted it may not always be the healthiest food, but if he wants to eat something, I give it to him. He still gets the tube feed over night, but I dropped him back down to one can of formula instead of two since he seemed to be eating and drinking so well. Bill and I have also noticed that he seems to be having an easier time handling different textures and larger bites, and seems to be gagging a lot less.
Tuesday (Round 5, Day 0) morning we again put Neya on the bus, and then waited for the hospital to call and tell us they were ready for us to come over. I was hoping it would be early in the day so that Bill could help move us back in before having to pick Neya up from school, and so that hopefully Collin's chemo could get started before 4:00 am. They called us just before lunchtime, so we loaded the cars with the bins of toys, the high chair, and the clothes we would need for the next few weeks and headed back to the hospital. We got settled in and unpacked, had lunch, and later Bill picked Neya up from school and brought her to the hospital. We all ate dinner together, and then Bill and Neya left early enought that they could get home and Neya could get to bed by 8:00 pm. When Bill and Neya left, Collin cried and pointed to the door, probably telling me he wanted to go home too. I just hugged him and told him I was staying with him. The pre-hydration fluids were hung at 5:30 pm, and then the chemo started at 10:00 pm. That night Collin got Cisplatin. We didn't give him his tube feeding overnight to hopefully prevent some vomiting.
Collin slept pretty well Tuesday night, and was very excited to see the breakfast tray come in the morning. He ate all of his breakfast and part of mine, but unfortunately he didn't keep it down. Later he ate just as well for lunch and dinner, and luckily didn't throw up any more. Overall he had a good day Wednesday (Round 5, Day 1). We played a lot, and he had a good nap in the afternoon. He was excited to see Bill and Neya Wednesday evening, and luckily didn't cry when they left. His chemo started a bit later Wednesday night due to an equipment malfunction that caused the Mesna, the rescue agent for the Cytoxan, to spill, so chemo was delayed an hour and a half until they got more Mesna. In the end it was no big deal; the doctor assured me the small delay wouldn't impact the effectiveness of the treatment, and I was glad that Collin got another decent night's sleep. I was afraid that having his blood pressure taken regularly through the infusion of Cytoxan would wake him up, along with having to have regular diaper changes due to all of the fluids he was receiving. So he received Etoposide and Cytoxan, along with the Mesna, and he will receive the same three drugs tonight (Round 5, Day 2).
Today was another pretty good day. Collin seemed a bit more clingy than usual whenever anyone came into the room; usually in retrospect I realize the increased clingyness happens when he's not feeling well. Maybe he was nauseous, or maybe his gums are hurting (he is starting to cut two-year molars). But he played well, pulled himself up to stand during his OT session, and ate well at all meals-with no vomiting today. More than once I noticed his left eye seemed to be turned in less, and when I mentioned it to his oncologist, she said perhaps Vincristine toxicity is starting to wear off (if that's what was causing that eye to turn in in the first place). He also had another good nap this afternoon, and is sleeping peacefully as I type this. Hopefully he will sleep through the chemo tonight, and we will both get some good rest!
Tuesday (Round 5, Day 0) morning we again put Neya on the bus, and then waited for the hospital to call and tell us they were ready for us to come over. I was hoping it would be early in the day so that Bill could help move us back in before having to pick Neya up from school, and so that hopefully Collin's chemo could get started before 4:00 am. They called us just before lunchtime, so we loaded the cars with the bins of toys, the high chair, and the clothes we would need for the next few weeks and headed back to the hospital. We got settled in and unpacked, had lunch, and later Bill picked Neya up from school and brought her to the hospital. We all ate dinner together, and then Bill and Neya left early enought that they could get home and Neya could get to bed by 8:00 pm. When Bill and Neya left, Collin cried and pointed to the door, probably telling me he wanted to go home too. I just hugged him and told him I was staying with him. The pre-hydration fluids were hung at 5:30 pm, and then the chemo started at 10:00 pm. That night Collin got Cisplatin. We didn't give him his tube feeding overnight to hopefully prevent some vomiting.
Collin slept pretty well Tuesday night, and was very excited to see the breakfast tray come in the morning. He ate all of his breakfast and part of mine, but unfortunately he didn't keep it down. Later he ate just as well for lunch and dinner, and luckily didn't throw up any more. Overall he had a good day Wednesday (Round 5, Day 1). We played a lot, and he had a good nap in the afternoon. He was excited to see Bill and Neya Wednesday evening, and luckily didn't cry when they left. His chemo started a bit later Wednesday night due to an equipment malfunction that caused the Mesna, the rescue agent for the Cytoxan, to spill, so chemo was delayed an hour and a half until they got more Mesna. In the end it was no big deal; the doctor assured me the small delay wouldn't impact the effectiveness of the treatment, and I was glad that Collin got another decent night's sleep. I was afraid that having his blood pressure taken regularly through the infusion of Cytoxan would wake him up, along with having to have regular diaper changes due to all of the fluids he was receiving. So he received Etoposide and Cytoxan, along with the Mesna, and he will receive the same three drugs tonight (Round 5, Day 2).
Today was another pretty good day. Collin seemed a bit more clingy than usual whenever anyone came into the room; usually in retrospect I realize the increased clingyness happens when he's not feeling well. Maybe he was nauseous, or maybe his gums are hurting (he is starting to cut two-year molars). But he played well, pulled himself up to stand during his OT session, and ate well at all meals-with no vomiting today. More than once I noticed his left eye seemed to be turned in less, and when I mentioned it to his oncologist, she said perhaps Vincristine toxicity is starting to wear off (if that's what was causing that eye to turn in in the first place). He also had another good nap this afternoon, and is sleeping peacefully as I type this. Hopefully he will sleep through the chemo tonight, and we will both get some good rest!
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