Journal entry by Tiffany Marler —
Good evening all. Before I start, he's doing well. Our absence was due to the events that occurred during Round 3. It was nothing short of brutal so getting words to form into sentences while keeping our wits about us as well as continuing to work and take care of everything we are responsible for in life was impossible. But..here we are again, above water slightly.
Last round was Intensification one. He had roughly 10X the amount of AraC (cytarabine) as Round 2 plus the second chemo he was getting ETope (Etopicde). He also gets an intrathetcal injection on day 1 into his spinal fluid for which he is anesthetized. Anesthesia and Grant don't get along swell so by Day 1 last round he was already not able to hold anything down and continued this way....for 27 days of the 34 days in the hospital. I would like to add on that 27th day I discussed with his caregivers something I had heard during the first two weeks of this and that was a synthetic THC which is the psychoactive ingredient in Cannabis called Marinol. Those familiar with Delta-8 this is actually Delta-9. His NP was MORE than willing to give that a try since we had not yet and we brought it up at the same time to the resident to explore. Within 2 hours...he was eating and eating a TON. (more on this subject below)
In addition to the nausea and vomiting his platelets were low as they were supposed to be (that's what chemo does) and dry dry sinuses due to the fact that he is in a very special section of the hospital with high specialized filters to accommodate for the zero immune system which leads to bloody noses. Ohhhh the bloody noses. Grant hates this more than anything during the last 4 months. ENT's pack his nose when this happens because he can bleed for HOURS (2-4) and bleeding then depletes his red blood cells and platelets even more, so he has to get more transfusions. The packings are PAINFUL AF!
Headaches...he got a terrible neck and headache also that lead to days of misery.
Fevers...he spiked a fevers both during and AFTER chemo on June 10th. This is always cause for alarm with someone without an immune system, and test upon tests, upon tests ensue. We think the most likely cause for his fevers was a mild fungal lung infection that can occur in those without an immune system. Now the most interesting thing is when their counts are zero or very low you don't have the immune response one would expect from a normally healthy person, so it lays in there without detection but causing issues. The symptoms show up when his immune system comes back. He held on to that fever until about June 22nd which is also so frustrating. Fevers ranged from 101 to 104. Tylenol is the only thing he can take for it in this world and it takes 2 hours for it to work for him. He can get it every 6 hours, so there are very few hours in a day his body would be even near a normal temperature. Guess what fevers do....eat up your platelets....guess what not having platelets does...BLOODY NOSES! Ughhhhhhhhhhhhhhhhhhhhhhhhhhh......................(that's the mild version of how we felt)
He. Was. A. Mess.
When he is a mess...we are a mess. Hearts so heavy. Many tears shed sitting on his bed feeling helpless. Also, we sleep on a cot in his room whoever is staying with him and round 2 he was very willing for us to leave and let him have his space. This round...he asked me to stay....{heart broken} All of that takes a toll on all of us, CLEARLY!
FINALLY, he was able to come home again for a 10 day stent from June 28th to July 7th. We had just a minor event where we had to run up to Children's hospital on July 3rd to see why his pupil was HUGE while the other was smaller. They were definitely concerned about neurological events or strokes but no...that is not what happened and ended up a little bit comical. He has a patch for nausea and he realized it was on for too long and took it off and rolled it around in his fingers. He went back to his room and itched his eyes....welp...that didnt go well :) But if you can have a good time running your kid 65 miles to ER at 9PM we did :) Saw fireworks...hwy detours on insane backroads...first time he had been to the cafeteria at the hospital..ran in to nurse friends...it was a good night under the given circumstances lol.
Round 4...
Wednesday we started Round 4 of 5. So far...SO GOOD. For the LP on Wednesday they did a fluid bolus beforehand to try to prevent any BP drops, headaches and nausea as well as giving him one of the anti nausea meds before and I can say it all made a huge difference in his recovery. He looked awesome and awake coming back into the room and he only ended up with a mild headache solved with IV caffeine 500MG (I know there are over half of you that wish this was a thing for everyone lol) He did great day 1. Day 2, no eating because tooooo nauseous to eat. Day 3, Marinol 11:30 AM....eating food by 12:30 PM and didn't stop until 7PM after second dose. I'm going to only go so far on this conversation here, but I'm going to say this. Cannabis saves lives...derivatives also. He's happy and content and eating!!!!! Huge sigh of relief. Its seriously just so impossible to watch your child not be able to eat anything for so long. We are beyond pleased with our new findings of what is working for him, not only for nausea but pain. We found what works for him when/if nose packings are necessary and what works for nausea. We know what works for headaches of various kinds, we know what works for low BP and more. It's a relief to know we know how to tackle a lot of things for him specifically after nearly 4 months of trying the best everyone can to keep him comfortable and pain free.
This round is 6 days, two different types of chemo, intensification 2. High dose AraC and a new one also. Today we are only one dose away from being finished with AraC and two more doses of the new one. What we hope for now is not only continued eating and feeling "fine" but for him not to spike any fevers AT ALL EVER. His lungs are improving from the assumption of fungal lung infection per the CT scan we did on Tuesday. Need to keep it that way. We are all very optimistic on this round and hope he will be playing games in very short order.
Why playing games is so important??? While he was on his break he was able to do his official signing for Columbia College eSports team!!!! We are SO excited for him to finish up treatments and attend college in the fall. It's gonna be great!
Super duper long post due to the time in between posts so you are welcome for your bedtime story or morning breakfast read :) Thank you to everyone for continued check ins and support.
P.S. The funny picture with hat and "tattoos" is me being creative with Grant sitting in hospital room too long and I drew on the tagaderms and made him some sick tats...the one on his neck is a poison bottle 😂
Last round was Intensification one. He had roughly 10X the amount of AraC (cytarabine) as Round 2 plus the second chemo he was getting ETope (Etopicde). He also gets an intrathetcal injection on day 1 into his spinal fluid for which he is anesthetized. Anesthesia and Grant don't get along swell so by Day 1 last round he was already not able to hold anything down and continued this way....for 27 days of the 34 days in the hospital. I would like to add on that 27th day I discussed with his caregivers something I had heard during the first two weeks of this and that was a synthetic THC which is the psychoactive ingredient in Cannabis called Marinol. Those familiar with Delta-8 this is actually Delta-9. His NP was MORE than willing to give that a try since we had not yet and we brought it up at the same time to the resident to explore. Within 2 hours...he was eating and eating a TON. (more on this subject below)
In addition to the nausea and vomiting his platelets were low as they were supposed to be (that's what chemo does) and dry dry sinuses due to the fact that he is in a very special section of the hospital with high specialized filters to accommodate for the zero immune system which leads to bloody noses. Ohhhh the bloody noses. Grant hates this more than anything during the last 4 months. ENT's pack his nose when this happens because he can bleed for HOURS (2-4) and bleeding then depletes his red blood cells and platelets even more, so he has to get more transfusions. The packings are PAINFUL AF!
Headaches...he got a terrible neck and headache also that lead to days of misery.
Fevers...he spiked a fevers both during and AFTER chemo on June 10th. This is always cause for alarm with someone without an immune system, and test upon tests, upon tests ensue. We think the most likely cause for his fevers was a mild fungal lung infection that can occur in those without an immune system. Now the most interesting thing is when their counts are zero or very low you don't have the immune response one would expect from a normally healthy person, so it lays in there without detection but causing issues. The symptoms show up when his immune system comes back. He held on to that fever until about June 22nd which is also so frustrating. Fevers ranged from 101 to 104. Tylenol is the only thing he can take for it in this world and it takes 2 hours for it to work for him. He can get it every 6 hours, so there are very few hours in a day his body would be even near a normal temperature. Guess what fevers do....eat up your platelets....guess what not having platelets does...BLOODY NOSES! Ughhhhhhhhhhhhhhhhhhhhhhhhhhh......................(that's the mild version of how we felt)
He. Was. A. Mess.
When he is a mess...we are a mess. Hearts so heavy. Many tears shed sitting on his bed feeling helpless. Also, we sleep on a cot in his room whoever is staying with him and round 2 he was very willing for us to leave and let him have his space. This round...he asked me to stay....{heart broken} All of that takes a toll on all of us, CLEARLY!
FINALLY, he was able to come home again for a 10 day stent from June 28th to July 7th. We had just a minor event where we had to run up to Children's hospital on July 3rd to see why his pupil was HUGE while the other was smaller. They were definitely concerned about neurological events or strokes but no...that is not what happened and ended up a little bit comical. He has a patch for nausea and he realized it was on for too long and took it off and rolled it around in his fingers. He went back to his room and itched his eyes....welp...that didnt go well :) But if you can have a good time running your kid 65 miles to ER at 9PM we did :) Saw fireworks...hwy detours on insane backroads...first time he had been to the cafeteria at the hospital..ran in to nurse friends...it was a good night under the given circumstances lol.
Round 4...
Wednesday we started Round 4 of 5. So far...SO GOOD. For the LP on Wednesday they did a fluid bolus beforehand to try to prevent any BP drops, headaches and nausea as well as giving him one of the anti nausea meds before and I can say it all made a huge difference in his recovery. He looked awesome and awake coming back into the room and he only ended up with a mild headache solved with IV caffeine 500MG (I know there are over half of you that wish this was a thing for everyone lol) He did great day 1. Day 2, no eating because tooooo nauseous to eat. Day 3, Marinol 11:30 AM....eating food by 12:30 PM and didn't stop until 7PM after second dose. I'm going to only go so far on this conversation here, but I'm going to say this. Cannabis saves lives...derivatives also. He's happy and content and eating!!!!! Huge sigh of relief. Its seriously just so impossible to watch your child not be able to eat anything for so long. We are beyond pleased with our new findings of what is working for him, not only for nausea but pain. We found what works for him when/if nose packings are necessary and what works for nausea. We know what works for headaches of various kinds, we know what works for low BP and more. It's a relief to know we know how to tackle a lot of things for him specifically after nearly 4 months of trying the best everyone can to keep him comfortable and pain free.
This round is 6 days, two different types of chemo, intensification 2. High dose AraC and a new one also. Today we are only one dose away from being finished with AraC and two more doses of the new one. What we hope for now is not only continued eating and feeling "fine" but for him not to spike any fevers AT ALL EVER. His lungs are improving from the assumption of fungal lung infection per the CT scan we did on Tuesday. Need to keep it that way. We are all very optimistic on this round and hope he will be playing games in very short order.
Why playing games is so important??? While he was on his break he was able to do his official signing for Columbia College eSports team!!!! We are SO excited for him to finish up treatments and attend college in the fall. It's gonna be great!
Super duper long post due to the time in between posts so you are welcome for your bedtime story or morning breakfast read :) Thank you to everyone for continued check ins and support.
P.S. The funny picture with hat and "tattoos" is me being creative with Grant sitting in hospital room too long and I drew on the tagaderms and made him some sick tats...the one on his neck is a poison bottle 😂
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