Journal entry by Heather Reynolds —
Proverbs 3:5-6
5 Trust in the LORD with all your heart and lean not on your own understanding;
6 in all your ways submit to him, and he will make your paths straight.
We are living in such a strange time on this planet we call Earth. I think that with all of our knowledge and technology, many of us thought we were impervious to pandemic; Almost as if were a planet of teenagers and we think we are invincible. Oh how naive we were (and some still are). I have seen selfishness and selflessness . I wish I could say that I have seen more of the latter, but that would be a lie. But I refuse to lose faith and will continue to pray for our community, our country and our world. I will pray that people will realize we need to stay home to protect ourselves and the most vulnerable of our population.
This pandemic has allowed me to rethink my priorities! My family is my world and time with them is priceless. I miss my parents, my sisters and my extended family. I cannot wait to see them again. I know that they are hurting and wanting to see us too. It has been hard for my mom and dad to not be able to come down and love on their sweet grandbaby! I am hopeful we can see them this summer!
We are now excited to go to the hospital on our weekly Friday jaunt for bloodwork and chemo, why?, because we get to escape the confines of our home. I have never seen Texas Children's hospital so incredibly sparse of little people and parents. They are now taking temps at check in and on the clinic floor. Other than that, protocols seem about the same.
Last night Sadie had a good night, she had a little color, was feeling a bit peppy, no GI issues except for some slight nausea and then...chemo happened today. Color gone, tummy upset, we are praying there won't be GI problems this week, but we will deal with what ever comes our way. We are once again struggling to find food she will eat, and it changes often. This is very difficult as choices at the grocery stores continue to be slim pickings and we try to limit the number times we leave the house and risk exposing Lou. We haven't figured out how to solve this issue yet.
Next Friday she is supposed to do the oral chemo again. If Sadie thinks about it or we talk about it near her, she physically gags. She was never a grape juice fan, but now just the thought of it makes her gag. (I don't think she will be a wine drinker when she is older) This lead Sadie, Dad and myself to seek an alternative to the oral liquid We were told she could get the Inrinotecan by infusion instead of orally but we'd have to change her chemo start date from Friday to Monday and she would have to come in Mon-Fri to get the infusion every three weeks. When this plan was proposed to Lou, the relief could be felt in the room. You know that liquid chemo is so bad if she is willing to come to the hospital 5 days in a row for infusion. Of course this means $65.00 in parking fees every three weeks and $13.00 for the two weeks in between 😱 So we needed to figure that out...luckily I talked with social work at the hospital and they will validate our parking for us moving forward. Huge blessing!!!!
We talked with the VAT nurse. VAT has to be called every time she get's an IV for chemo because she has such difficult veins, hard to find and they like to roll. She recommended getting a port. She said the risk of infection is low compared with the permenant damage that could be cause with accessing her veins so often.
So the plan moving forward, she will have her port placed next week via out patient surgery, unfortunately, she will have to be tested for Covid 19 the day before. I have purposefully not told her just how aweful this test is, they go all the way into the sinus cavity with that swab (eww, oww, yuck). I think ignorance will help her make it through this one. She will begin the second round of chemo on Monday April 13th. She will still get the oral chemo that comes in pill form. That one is easy just three pills to take and she does that fine. In four weeks, they will repeat her scans to see if the tumors have shrunk, stayed the same or grown....that is going to be a very nerve racking week, but we maintain hope and know that God is walking this path with us.
Hold your family tight and enjoy them during this time, it won't last forever and you will probably miss it. Take care and stay safe.
Blessings
We are living in such a strange time on this planet we call Earth. I think that with all of our knowledge and technology, many of us thought we were impervious to pandemic; Almost as if were a planet of teenagers and we think we are invincible. Oh how naive we were (and some still are). I have seen selfishness and selflessness . I wish I could say that I have seen more of the latter, but that would be a lie. But I refuse to lose faith and will continue to pray for our community, our country and our world. I will pray that people will realize we need to stay home to protect ourselves and the most vulnerable of our population.
This pandemic has allowed me to rethink my priorities! My family is my world and time with them is priceless. I miss my parents, my sisters and my extended family. I cannot wait to see them again. I know that they are hurting and wanting to see us too. It has been hard for my mom and dad to not be able to come down and love on their sweet grandbaby! I am hopeful we can see them this summer!
We are now excited to go to the hospital on our weekly Friday jaunt for bloodwork and chemo, why?, because we get to escape the confines of our home. I have never seen Texas Children's hospital so incredibly sparse of little people and parents. They are now taking temps at check in and on the clinic floor. Other than that, protocols seem about the same.
Last night Sadie had a good night, she had a little color, was feeling a bit peppy, no GI issues except for some slight nausea and then...chemo happened today. Color gone, tummy upset, we are praying there won't be GI problems this week, but we will deal with what ever comes our way. We are once again struggling to find food she will eat, and it changes often. This is very difficult as choices at the grocery stores continue to be slim pickings and we try to limit the number times we leave the house and risk exposing Lou. We haven't figured out how to solve this issue yet.
Next Friday she is supposed to do the oral chemo again. If Sadie thinks about it or we talk about it near her, she physically gags. She was never a grape juice fan, but now just the thought of it makes her gag. (I don't think she will be a wine drinker when she is older) This lead Sadie, Dad and myself to seek an alternative to the oral liquid We were told she could get the Inrinotecan by infusion instead of orally but we'd have to change her chemo start date from Friday to Monday and she would have to come in Mon-Fri to get the infusion every three weeks. When this plan was proposed to Lou, the relief could be felt in the room. You know that liquid chemo is so bad if she is willing to come to the hospital 5 days in a row for infusion. Of course this means $65.00 in parking fees every three weeks and $13.00 for the two weeks in between 😱 So we needed to figure that out...luckily I talked with social work at the hospital and they will validate our parking for us moving forward. Huge blessing!!!!
We talked with the VAT nurse. VAT has to be called every time she get's an IV for chemo because she has such difficult veins, hard to find and they like to roll. She recommended getting a port. She said the risk of infection is low compared with the permenant damage that could be cause with accessing her veins so often.
So the plan moving forward, she will have her port placed next week via out patient surgery, unfortunately, she will have to be tested for Covid 19 the day before. I have purposefully not told her just how aweful this test is, they go all the way into the sinus cavity with that swab (eww, oww, yuck). I think ignorance will help her make it through this one. She will begin the second round of chemo on Monday April 13th. She will still get the oral chemo that comes in pill form. That one is easy just three pills to take and she does that fine. In four weeks, they will repeat her scans to see if the tumors have shrunk, stayed the same or grown....that is going to be a very nerve racking week, but we maintain hope and know that God is walking this path with us.
Hold your family tight and enjoy them during this time, it won't last forever and you will probably miss it. Take care and stay safe.
Blessings
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