Journal entry by Sydney Alumbaugh —
I have not kept up with these updates as well as I had hoped to, so this will be a long one and I'll try to be sure I cover everything, because the last 2.5 weeks since my last update have been the longest and hardest of our lives.
April 8th- Thiotepa
Waylon received a chemo called thiotepa this day. Thiotepa is secreted through the skin and bodily fluids, so although this was his last dose of chemotherapy, it was probably the hardest of the chemo days. Waylon couldn't have stickers on his skin because it would trap the chemo against his skin and cause irritation, so he had wrap dressings which consist of gauze and an ace bandage, and had to be changed every 8 hours, including in the middle of the night. With each dressing change he also had to be bathed (sponge bath, which he hates) so this day became traumatic for Way pretty quickly, but thankfully it was over fairly quickly. He handled the chemo well besides a few blisters on his face and head that popped up during the couple of days following, but were not a concern to doctors.
April 11th- Transplant Day! Day 0
Waylon's former blood type was O+, and his donors (also his new blood type) is AB+. Because of this, the donors stem cells had to be processed to deplete the red blood cells so that his body would not reject them. This was done through Carter Bloodcare off site, and then transported to Cook Children's. It took longer than expected for them to arrive, so we spent most of the day waiting to have his stem cells infused. It all worked out because his main transplant doctor wasn't in during the day that day, but was on call for that evening, and was able to be the doctor present during his transplant. His miracle stem cells infused from 8:14-11:53pm, most of which he slept through. Waylon did not have any immediate reactions to the infusion. This day was so exciting, and also extremely nerve wracking as it kicked off the hardest days ahead of us. Waylon has started throwing up as a side effect to chemo about 3 days prior to transplant.
April 15th- NG Tube placed. Day +4
The evening of the 14th Waylon stopped wanting to eat, and by mid-morning on the 15th his doctors decided to go ahead with an NG tube to be sure we didn't get behind on his nutrition. He handled it well, and was also able to receive oral meds without having to take them by mouth, which was becoming increasingly harder as mucositis had really started to set in. Mucositis is the inflammation of the entire gastrointestinal lining due to chemo. when the lining becomes inflamed it secretes thick mucus and the skin can also break down and leave mouth sores or ulcers. This causes pain, vomiting, diarrhea, and gagging because of the amount of mucus build up. Poor Waylon started to throw up, and often choke on, lots and lots of mucus. The exhaustion also b egan to hit him and he was sleeping a lot.
Despite all of the horrible side effects, doctors continued to be happy with his progress, and everything he was experiencing was entirely expected.
April 17th- Hair. Day +6
This day Way's hair began to fall out, and when it started it was going quickly, so we cut a little piece of it to keep. Even though it's just hair, and the least of our worries, it felt like a big moment.
April 18th- Squeaky breathing. Day +7
Waylon spiked a low fever of 101 first thing in the morning. When a patient here fevers, all of their lines has to be checked for infection just to be sure. Since Waylon's port hadn't been access in the last couple of weeks, they had to access it and draw labs from it as well as from his CVL. His fever quickly went away, and his labs came back clear, no infection, but he continued to feels terrible all day from side effects. In the evening, after one of his throwing up episodes, Waylon's breathing started to sound squeaky, which prompted his nurse to have several people check out how his lungs were sounding. The general consensus was that his lungs sounded good, but the squeaking was weird, so we would monitor his oxygen and keep an eye on it.
April 19th- Hell Day. Day +8
This day was the worst we had. His mucositis had become so terrible, the squeak in his breathing was getting worse, he was SO extremely agitated, he was quite literally writhing. By the afternoon, his airways had become so inflamed and irritated that he was having a hard time getting a deep breath in and keeping his O2 levels up. He needed a breathing treatment, oxygen, more pain meds, and a dose of steroids. He was absolutely miserable and inconsolable all day. The pain management team changed his continuous pain med pump from morphine to ketamine, and made a new plan to keep him comfortable, which made a world of difference, and he was finally able to get some rest that evening after the steroids took care of some of the inflammation and his pain was under control.
April 20th- WE HAVE COUNTS! Day +9
Post transplant, Waylon is given lots of meds to help grow his marrow, and also to avoid rejection. Doctors told us that day +10 we would check for cell counts, but not to expect them to be there just yet, that it was more likely to see them start to come up day +12-13. For whatever reason, they ran a full CBC on Saturday and that afternoon we got the news that he had white blood cell and ANC neutrophil counts! They were very small, but anything is good news! And much earlier than expected! Waylon also started to feel much better, and has every day since then.
4/21 Day +10: WBC 0.35, ANC 295
4/22 Day +11: WBC 0.76, ANC 650
4/23 Day +12: WBC 2.04, ANC 1612
These counts are fantastic for only being day +12 currently! There isn't a certain goal as far as where his counts need to be to go home, but a normal WBC value is 5-10, and a normal ANC value is greater than 1500. A nurse told us that typically kids leave with a WBC value around 2.0, and a ANC value of about 1500. Waylon has already met these values!!!
With his counts coming up, Waylon is starting to feel significantly better, although still pretty yucky. The important thing is that he can now heal, and we have turned that corner and are headed back uphill! Praise God!
What the rest of our stay looks like now is coming off of his continuous pain pump in the morning, starting to switch his IV meds over to oral (which for now will be administered through his NG tube), learning everything we need to know to take care of Waylon at home, and HEALING. We will still be in the BMT unit for another couple of weeks, and there is still a risk of developing graft vs host disease, which can be treated effectively if caught right away and is pretty common, but we were told by one of his doctors today that if all continues to go well, and given he doesn't spike a fever causing us to need to stay longer, we will probably be able to go home the week after next- the week of his first birthday!
ALL the praise be to God. This boy is a true miracle.
We would appreciate your continued prayers as he still has a long road ahead, and even once we go home we have a lot of meds to take, healing to do, and isolation ahead of us, BUT we are so ready and excited to take our boy home very soon!
There will never be enough words to thank each of you for your unwavering support through all of this. We are forever grateful.
April 8th- Thiotepa
Waylon received a chemo called thiotepa this day. Thiotepa is secreted through the skin and bodily fluids, so although this was his last dose of chemotherapy, it was probably the hardest of the chemo days. Waylon couldn't have stickers on his skin because it would trap the chemo against his skin and cause irritation, so he had wrap dressings which consist of gauze and an ace bandage, and had to be changed every 8 hours, including in the middle of the night. With each dressing change he also had to be bathed (sponge bath, which he hates) so this day became traumatic for Way pretty quickly, but thankfully it was over fairly quickly. He handled the chemo well besides a few blisters on his face and head that popped up during the couple of days following, but were not a concern to doctors.
April 11th- Transplant Day! Day 0
Waylon's former blood type was O+, and his donors (also his new blood type) is AB+. Because of this, the donors stem cells had to be processed to deplete the red blood cells so that his body would not reject them. This was done through Carter Bloodcare off site, and then transported to Cook Children's. It took longer than expected for them to arrive, so we spent most of the day waiting to have his stem cells infused. It all worked out because his main transplant doctor wasn't in during the day that day, but was on call for that evening, and was able to be the doctor present during his transplant. His miracle stem cells infused from 8:14-11:53pm, most of which he slept through. Waylon did not have any immediate reactions to the infusion. This day was so exciting, and also extremely nerve wracking as it kicked off the hardest days ahead of us. Waylon has started throwing up as a side effect to chemo about 3 days prior to transplant.
April 15th- NG Tube placed. Day +4
The evening of the 14th Waylon stopped wanting to eat, and by mid-morning on the 15th his doctors decided to go ahead with an NG tube to be sure we didn't get behind on his nutrition. He handled it well, and was also able to receive oral meds without having to take them by mouth, which was becoming increasingly harder as mucositis had really started to set in. Mucositis is the inflammation of the entire gastrointestinal lining due to chemo. when the lining becomes inflamed it secretes thick mucus and the skin can also break down and leave mouth sores or ulcers. This causes pain, vomiting, diarrhea, and gagging because of the amount of mucus build up. Poor Waylon started to throw up, and often choke on, lots and lots of mucus. The exhaustion also b egan to hit him and he was sleeping a lot.
Despite all of the horrible side effects, doctors continued to be happy with his progress, and everything he was experiencing was entirely expected.
April 17th- Hair. Day +6
This day Way's hair began to fall out, and when it started it was going quickly, so we cut a little piece of it to keep. Even though it's just hair, and the least of our worries, it felt like a big moment.
April 18th- Squeaky breathing. Day +7
Waylon spiked a low fever of 101 first thing in the morning. When a patient here fevers, all of their lines has to be checked for infection just to be sure. Since Waylon's port hadn't been access in the last couple of weeks, they had to access it and draw labs from it as well as from his CVL. His fever quickly went away, and his labs came back clear, no infection, but he continued to feels terrible all day from side effects. In the evening, after one of his throwing up episodes, Waylon's breathing started to sound squeaky, which prompted his nurse to have several people check out how his lungs were sounding. The general consensus was that his lungs sounded good, but the squeaking was weird, so we would monitor his oxygen and keep an eye on it.
April 19th- Hell Day. Day +8
This day was the worst we had. His mucositis had become so terrible, the squeak in his breathing was getting worse, he was SO extremely agitated, he was quite literally writhing. By the afternoon, his airways had become so inflamed and irritated that he was having a hard time getting a deep breath in and keeping his O2 levels up. He needed a breathing treatment, oxygen, more pain meds, and a dose of steroids. He was absolutely miserable and inconsolable all day. The pain management team changed his continuous pain med pump from morphine to ketamine, and made a new plan to keep him comfortable, which made a world of difference, and he was finally able to get some rest that evening after the steroids took care of some of the inflammation and his pain was under control.
April 20th- WE HAVE COUNTS! Day +9
Post transplant, Waylon is given lots of meds to help grow his marrow, and also to avoid rejection. Doctors told us that day +10 we would check for cell counts, but not to expect them to be there just yet, that it was more likely to see them start to come up day +12-13. For whatever reason, they ran a full CBC on Saturday and that afternoon we got the news that he had white blood cell and ANC neutrophil counts! They were very small, but anything is good news! And much earlier than expected! Waylon also started to feel much better, and has every day since then.
4/21 Day +10: WBC 0.35, ANC 295
4/22 Day +11: WBC 0.76, ANC 650
4/23 Day +12: WBC 2.04, ANC 1612
These counts are fantastic for only being day +12 currently! There isn't a certain goal as far as where his counts need to be to go home, but a normal WBC value is 5-10, and a normal ANC value is greater than 1500. A nurse told us that typically kids leave with a WBC value around 2.0, and a ANC value of about 1500. Waylon has already met these values!!!
With his counts coming up, Waylon is starting to feel significantly better, although still pretty yucky. The important thing is that he can now heal, and we have turned that corner and are headed back uphill! Praise God!
What the rest of our stay looks like now is coming off of his continuous pain pump in the morning, starting to switch his IV meds over to oral (which for now will be administered through his NG tube), learning everything we need to know to take care of Waylon at home, and HEALING. We will still be in the BMT unit for another couple of weeks, and there is still a risk of developing graft vs host disease, which can be treated effectively if caught right away and is pretty common, but we were told by one of his doctors today that if all continues to go well, and given he doesn't spike a fever causing us to need to stay longer, we will probably be able to go home the week after next- the week of his first birthday!
ALL the praise be to God. This boy is a true miracle.
We would appreciate your continued prayers as he still has a long road ahead, and even once we go home we have a lot of meds to take, healing to do, and isolation ahead of us, BUT we are so ready and excited to take our boy home very soon!
There will never be enough words to thank each of you for your unwavering support through all of this. We are forever grateful.
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