Tonight Jerry, Ty, and I had the wonderful opportunity to go to dinner together. It was such fun! We ate oysters, burgers, and loaded fries. We laughed and joked. It was a gift.
When we got to the restaurant there was a short wait. We added our name to the list and they said they'd text us when a table was ready. We were on a cute little street with tons of little shops and restaurants, so we started walking around, taking it all in. Before long I got a text that our table was ready, so we turned around and headed back to the restaurant. Ty started running and immediately, without blinking an eye I said firmly, "Ty don't run." Not because I thought he'd run into traffic, or because he wasn't being considerate of others, or because I'm a stick in the mud. But because he's black, and I don't know what any bystander or the security officer a few yards away in his vehicle will think of a black teenage boy running down the street at almost 9pm on a Saturday. People are insane. And black males are viewed as a threat. So my automatic, knee jerk reaction to anything Ty does in public is a split second assessment of how threatening his behavior could be interpreted. That's how it is for me, and every other mom of a black boy in America.
I just thought you should know, in case you didn't.
Saturday, April 11, 2015
Friday, April 10, 2015
A taste of Eli's medicine
A taste of Eli's medicine
I like to think that because I have been Eli's primary caregiver from the beginning, I have an intimate understanding of what he is going through. And on some level I do. But really, I don't. No one is poking and prodding me, taking 1,000 X-rays, pumping poison into my body, restricting my liberty and my diet.
Until now.
The doctors have decided that the best treatment for Eli is an additional haploidentical transplant (half match) along with the unrelated cord blood stem cells. Oh, and granulocyte transfusions (white blood cells).
A haploidentical donor is a biological parent. Two biological parents should each be a perfect half match to their child's HLA type.
And granulocytes? Those are like platelets in that you don't have to match blood types. BUT they don't live long and are not typically sitting in great number on a blood bank shelf. Plus, a person needing granulocyte transfusions will more than likely need them ongoing, so then you get into concerns like stacking up the variety of donors. Realistically, it's better for the body receiving transfusions to have as few donors as possible. So with all of those things in mind, they like to use a parent as the granulocyte donor. We are physically present, usually healthy enough, and as they say, "invested".
It makes sense that all things being equal, either Jerry or I could be the donor for the haploidentical stem cells or the granulocytes. But I'm here, and it's just easier if it all comes out of the same person. Less paperwork, less appointments, less testing. So I'm the big winner.
To get my blood easily and regularly they are going to put a central line in my chest. On Tuesday.
Yeah, it kinda got real when they made those plans. Which brings me to my point. Any parent would jump at the chance to DO something to help their child. I've been wanting to DO something since August. And now that I am? I am surprised to find out it comes with a side of anxiety. Not a terrible amount, just more than expected. I figured on a scale of 0-10, I'd be feeling level 1 or 2 nervous about getting a line. I'm actually more like a 4. I'm just so surprised by that.
Maybe you're thinking, "Ok sure, but it's not that big a deal." Um, yes an no. Yes, they do it all the time. And they also treat infections from lines to people that have to be hospitalized all the time, too. A catheter from the outside of your body into your heart is not without risks. It should be fine, but again, not without risks.
And then there's the care of it. It can't get wet. I can't imagine it's terribly comfortable.
Additionally, I will gain patient status. So I'll be a caregiver and a patient, which can be tricky, especially when I have to go to the clinic for several hours a couple times a week to have my blood taken, processed, and returned, and my dressing changed. It makes a HUGE difference that my mom is here for a long while to help care for Eli. Really, my mom being here makes this whole crazy (to me) plan possible.
Since they'll be taking my white cells twice a week they'll give me injections twice a week to up my white cell production, and I have to keep my iron levels up. So I'll be eating meat like it's my job. Ugh.
Now that I'm staring down a central line placement, I have an entirely new appreciation for what Eli has gone through. He's had a line of some kind for 8 months, not to mention ALL his various treatments and hospitalizations.
I absolutely have no second thoughts about doing this. My love has no bounds. I think science is incredible. I just get to anticipate it for several days. And then I get a small taste of what my baby and all our little fighter friends are going through.
And eat a lot of meat for next few months. :-/
Wish me luck!
I like to think that because I have been Eli's primary caregiver from the beginning, I have an intimate understanding of what he is going through. And on some level I do. But really, I don't. No one is poking and prodding me, taking 1,000 X-rays, pumping poison into my body, restricting my liberty and my diet.
Until now.
The doctors have decided that the best treatment for Eli is an additional haploidentical transplant (half match) along with the unrelated cord blood stem cells. Oh, and granulocyte transfusions (white blood cells).
A haploidentical donor is a biological parent. Two biological parents should each be a perfect half match to their child's HLA type.
And granulocytes? Those are like platelets in that you don't have to match blood types. BUT they don't live long and are not typically sitting in great number on a blood bank shelf. Plus, a person needing granulocyte transfusions will more than likely need them ongoing, so then you get into concerns like stacking up the variety of donors. Realistically, it's better for the body receiving transfusions to have as few donors as possible. So with all of those things in mind, they like to use a parent as the granulocyte donor. We are physically present, usually healthy enough, and as they say, "invested".
It makes sense that all things being equal, either Jerry or I could be the donor for the haploidentical stem cells or the granulocytes. But I'm here, and it's just easier if it all comes out of the same person. Less paperwork, less appointments, less testing. So I'm the big winner.
To get my blood easily and regularly they are going to put a central line in my chest. On Tuesday.
Yeah, it kinda got real when they made those plans. Which brings me to my point. Any parent would jump at the chance to DO something to help their child. I've been wanting to DO something since August. And now that I am? I am surprised to find out it comes with a side of anxiety. Not a terrible amount, just more than expected. I figured on a scale of 0-10, I'd be feeling level 1 or 2 nervous about getting a line. I'm actually more like a 4. I'm just so surprised by that.
Maybe you're thinking, "Ok sure, but it's not that big a deal." Um, yes an no. Yes, they do it all the time. And they also treat infections from lines to people that have to be hospitalized all the time, too. A catheter from the outside of your body into your heart is not without risks. It should be fine, but again, not without risks.
And then there's the care of it. It can't get wet. I can't imagine it's terribly comfortable.
Additionally, I will gain patient status. So I'll be a caregiver and a patient, which can be tricky, especially when I have to go to the clinic for several hours a couple times a week to have my blood taken, processed, and returned, and my dressing changed. It makes a HUGE difference that my mom is here for a long while to help care for Eli. Really, my mom being here makes this whole crazy (to me) plan possible.
Since they'll be taking my white cells twice a week they'll give me injections twice a week to up my white cell production, and I have to keep my iron levels up. So I'll be eating meat like it's my job. Ugh.
Now that I'm staring down a central line placement, I have an entirely new appreciation for what Eli has gone through. He's had a line of some kind for 8 months, not to mention ALL his various treatments and hospitalizations.
I absolutely have no second thoughts about doing this. My love has no bounds. I think science is incredible. I just get to anticipate it for several days. And then I get a small taste of what my baby and all our little fighter friends are going through.
And eat a lot of meat for next few months. :-/
Wish me luck!
Monday, April 6, 2015
Life in the BMTU
Life in the pediatric bone marrow transplant unit...there are lots of rules. So. Many. Rules. All for the safety of the patients, who are here because this is their only choice. So it's a good thing. But a lot to keep up with.
The BMT is a locked unit. When you get buzzed in you enter an anteroom where you put booties/shoe covers on your shoes and then scrub your hands with soap for 15 seconds at the sinks. Then you can come on the unit.
There are not even two dozen rooms. Nurses have two patients and they are always busy. Also, they are always available to help cheer on a kiddo or assist with an IV pole while walking or tricycling down the hallway.
There are no residents, only 2 fellows, a few nurse practitioners, and 5 or 6 attending doctors, who make decisions together regarding patients' treatment plans and issues that arise. That is probably my favorite aspect. You don't have one brilliant and highly experienced doctor leading your child's care, you have half a dozen. These are some passionate, hard working doctors.
One of the best parts of BMT is child life and the family support program. They plan daily and weekly activities to get the kids out of their rooms and engaged. Things like an Easter egg hunt, art activities (sand art, painting, bead projects), bingo, science activities, etc. They also plan and implement perks for caregivers. There are weekly massages (15 minute chair massage. It's not earth shattering, but it's nice), twice monthly relaxation tea, monthly (?) salon day where a hair stylist gives free cuts to caregivers (because we spend months in the hospital and get a bit raggedy), and occasionally other things. Usually a few times a month a church or other organization will provide a home cooked meal for the BMT patient families. The patients can't participate because the food prep is not controlled, which leads me to...
Food rules. This was the one big (HUGE) surprise for me. I didn't realize there was a special diet or how restrictive it could be. Whoa. First, it's a low lactose diet. I'm pretty sure that has to do with the chemo messing with your insides. It can be difficult for these kids' bodies to process dairy, so everyone gets a low lactose diet. This means lactose free milk and ice cream, and only certain kinds of cheeses. So in addition to the low lactose diet there is the neutropenic diet, which maybe I should have known about that since Eli has been neutropenic for all of 2015 so far, but...whoops! The neutropenic diet cuts out most opportunities for foodborne illness and fungal acquiring. So, no fresh, raw fruit or vegetables (fungus loves fresh produce). Any fresh produce must be cooked thoroughly. No beverages from a fountain. Basically just processed/pasteurized/lactose free/bottled beverages are allowed. Nothing at all from a deli, nothing from a buffet, no hand dipped ice cream, no soft serve ice cream or yogurt. No dried fruit or nuts. Nothing from a bakery. Homemade or commercially packaged baked goods are fine. Pretty much well cooked from scratch or totally processed foods are acceptable. Everything else is a no-go.
There are also rules about food prep and clean up. Wash the tops of canned goods before opening. Wash a can opener after each use. Dry your hands with paper towels. Replace dish towels daily, sponges weekly. Food can only sit out for 1 hour. Leftovers are to be discarded after 3 days. No thawing meats by sitting them out. Eggs have to be cooked through. Cold cuts heated until steaming. Only restaurants with an A in sanitation are acceptable and you have to ask them to prepare your food fresh. No garnishes. There's more, but that's what I remember right now. It's a lot.
In BMT the entire staff wants to see the kids as active as possible. That means they constantly encourage the kids who are walking/riding in the hall. It also means that when a doctor wants to talk to you, and you are in the hall with your kid, they tell you that they'll come find you when you're done, they don't want to interrupt the kids doing any sort of movement.
Eli is becoming slightly famous for his "walking music" as he calls it. The kid loves music. He's always loved Motown. So I just turn on my Motown station on pandora on my phone while Eli is walking or riding in the stroller around the unit. The nurses will sing along or dance as we go by with the music playing. Eli thinks it's hilarious. And when he's riding in the stroller he has his head bopping along to the music.
There are 2 washers and 2 dryers that are not vented externally so they take ages. There's a small kitchen that the caregivers share. Everyone gets half of a shelf in a cupboard and whatever space they can glean in the fridge/freezer. It works. There are mini fridges in the rooms, but they are for patient food and drinks only.
Until last month, the bathrooms in the patient rooms were for patients only. There were two bathrooms, one had a shower, for all the caregivers to share. You live on the unit for months at a time. Yikes. The week before we transferred into BMT they changed the policy. Now resident caregivers (not visitors) can use the bathroom and shower in the patient rooms. But you have to wipe it down with bleach wipes before and after use, every single time. That means wiling down the ENTIRE shower. It's a chore, but immensely better than sharing with dozens of your not so closest friends. They dont allow shower curtains b/c plastic harbors mold. If you intend to shower you have to get a flat sheet and drape it over the shower curtain rod. It works pretty well, except when it falls to the ground in the middle of your shower.
Overall, BMT is not a bad place to be. It's pretty cheery a lot of the time and other parents/caregivers are generally warm and respectful to each other. There's some comraderie since we all know each one has experienced some similar, difficult days. But the reality is no one wants to be there. We're all there because it's our last option, there are no other treatments for our kids. And that fact just sort of bubbles under the surface all the time.
The BMT is a locked unit. When you get buzzed in you enter an anteroom where you put booties/shoe covers on your shoes and then scrub your hands with soap for 15 seconds at the sinks. Then you can come on the unit.
There are not even two dozen rooms. Nurses have two patients and they are always busy. Also, they are always available to help cheer on a kiddo or assist with an IV pole while walking or tricycling down the hallway.
There are no residents, only 2 fellows, a few nurse practitioners, and 5 or 6 attending doctors, who make decisions together regarding patients' treatment plans and issues that arise. That is probably my favorite aspect. You don't have one brilliant and highly experienced doctor leading your child's care, you have half a dozen. These are some passionate, hard working doctors.
One of the best parts of BMT is child life and the family support program. They plan daily and weekly activities to get the kids out of their rooms and engaged. Things like an Easter egg hunt, art activities (sand art, painting, bead projects), bingo, science activities, etc. They also plan and implement perks for caregivers. There are weekly massages (15 minute chair massage. It's not earth shattering, but it's nice), twice monthly relaxation tea, monthly (?) salon day where a hair stylist gives free cuts to caregivers (because we spend months in the hospital and get a bit raggedy), and occasionally other things. Usually a few times a month a church or other organization will provide a home cooked meal for the BMT patient families. The patients can't participate because the food prep is not controlled, which leads me to...
Food rules. This was the one big (HUGE) surprise for me. I didn't realize there was a special diet or how restrictive it could be. Whoa. First, it's a low lactose diet. I'm pretty sure that has to do with the chemo messing with your insides. It can be difficult for these kids' bodies to process dairy, so everyone gets a low lactose diet. This means lactose free milk and ice cream, and only certain kinds of cheeses. So in addition to the low lactose diet there is the neutropenic diet, which maybe I should have known about that since Eli has been neutropenic for all of 2015 so far, but...whoops! The neutropenic diet cuts out most opportunities for foodborne illness and fungal acquiring. So, no fresh, raw fruit or vegetables (fungus loves fresh produce). Any fresh produce must be cooked thoroughly. No beverages from a fountain. Basically just processed/pasteurized/lactose free/bottled beverages are allowed. Nothing at all from a deli, nothing from a buffet, no hand dipped ice cream, no soft serve ice cream or yogurt. No dried fruit or nuts. Nothing from a bakery. Homemade or commercially packaged baked goods are fine. Pretty much well cooked from scratch or totally processed foods are acceptable. Everything else is a no-go.
There are also rules about food prep and clean up. Wash the tops of canned goods before opening. Wash a can opener after each use. Dry your hands with paper towels. Replace dish towels daily, sponges weekly. Food can only sit out for 1 hour. Leftovers are to be discarded after 3 days. No thawing meats by sitting them out. Eggs have to be cooked through. Cold cuts heated until steaming. Only restaurants with an A in sanitation are acceptable and you have to ask them to prepare your food fresh. No garnishes. There's more, but that's what I remember right now. It's a lot.
In BMT the entire staff wants to see the kids as active as possible. That means they constantly encourage the kids who are walking/riding in the hall. It also means that when a doctor wants to talk to you, and you are in the hall with your kid, they tell you that they'll come find you when you're done, they don't want to interrupt the kids doing any sort of movement.
Eli is becoming slightly famous for his "walking music" as he calls it. The kid loves music. He's always loved Motown. So I just turn on my Motown station on pandora on my phone while Eli is walking or riding in the stroller around the unit. The nurses will sing along or dance as we go by with the music playing. Eli thinks it's hilarious. And when he's riding in the stroller he has his head bopping along to the music.
There are 2 washers and 2 dryers that are not vented externally so they take ages. There's a small kitchen that the caregivers share. Everyone gets half of a shelf in a cupboard and whatever space they can glean in the fridge/freezer. It works. There are mini fridges in the rooms, but they are for patient food and drinks only.
Until last month, the bathrooms in the patient rooms were for patients only. There were two bathrooms, one had a shower, for all the caregivers to share. You live on the unit for months at a time. Yikes. The week before we transferred into BMT they changed the policy. Now resident caregivers (not visitors) can use the bathroom and shower in the patient rooms. But you have to wipe it down with bleach wipes before and after use, every single time. That means wiling down the ENTIRE shower. It's a chore, but immensely better than sharing with dozens of your not so closest friends. They dont allow shower curtains b/c plastic harbors mold. If you intend to shower you have to get a flat sheet and drape it over the shower curtain rod. It works pretty well, except when it falls to the ground in the middle of your shower.
Overall, BMT is not a bad place to be. It's pretty cheery a lot of the time and other parents/caregivers are generally warm and respectful to each other. There's some comraderie since we all know each one has experienced some similar, difficult days. But the reality is no one wants to be there. We're all there because it's our last option, there are no other treatments for our kids. And that fact just sort of bubbles under the surface all the time.
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