We are still here. Julia has been doing pretty well. She is moving around now and finding ways to do the things she enjoys. It has been fun having Mimi and Grandpa here for some fun entertainment and a welcome distraction. She had a great time with Princess Ariel on Sunday and is still talking about it. Such a special treat!
We are at that place in her recovery where frustration and limitations rule her emotions. I had forgotten about this stage from chemo until yesterday when it all came flooding back. The wonderful thing about kids and medical issues is their resilience and determination. In their minds, children are not limited by their diagnosis or situation. Every day they try their best to do as much as they can and to seize the moments they do feel good. They don't feel sorry for themselves or tell themselves they shouldn't be able to do something.
Julia wants to feel better and is trying to do her normal activities, but she's not quite there yet so she screams, and yells at people that try to help, and gets frustrated when she can't do something. Yesterday, I was doing school with Carter, thinking Julia would just watch TV or play with my mom. Not so much. She wanted to do her work, too. I knew that was a bad idea. I tried to talk her out of it with no luck. I decided to let her and keep it super simple, but even basic things like coloring and cutting were too much. It was not enjoyable for anyone involved. Her frustration and anger were flying in every direction.
Overall, she is feeling stronger each day and is able to move around more. We've been trying to stay away from the pain medicine as much as we can because of the bowel and bladder side effects it causes. She has done really well even without it. Her pain tolerance is incredibly high and she just amazes me in her ability to press on. We usually end up giving it to her only once or twice a day at this point.
We have been trudging on with her daily procedures. I have a checklist for every day and we work our way through. It has been a huge blessing having my mom here to help restrain her as we're doing things. She always reaches a point where she starts grabbing my hands or kicking, just out of instinct, and I don't want to hurt her or do any sort of damage. She is still having the same amount of pain. She still screams. She still resists and fights back. She hates every second of it. Her cecostomy wound site is still leaking around the clock. It still leaks stool and bleeds throughout the day and night. She can't stand having it cleaned or having me touch it every day for flushes. It still looks so raw and sore. I pray we see some change in it soon.
That is our biggest prayer request right now- for healing. Pray that her wound heals. Pray that we are nearing a point where we can actually begin to use it for its intended purpose. Pray that her colon heals with time and her body can function once again. Ultimately (besides staying cancer-free), that is our biggest goal right now. The doctors have done what they can do and now her body has to heal, her colon has to regain its muscle tone and original form, and her GI tract needs to operate in sync again. We know all of this lays in God's hands and we pray it is in Julia's future. As I go through the motions of all these painful procedures and hear her heart-wrenching wails, it is all I can think about... Lord, please let this all work.
Also please pray for preservation of Julia's urinary health. She has walked a fine line through this cancer journey and Dr. Hodges has done a wonderful job in being as proactive as he can to give her the very best outcome he knows how. Right now he is nervous. When I spoke with his nurse, Megan, last Friday and she began emailing him, he had many concerns. They had us set-up for at-home catheterizing in a matter of hours, in addition to his other concerns. Nurse Megan has called me daily to check on Julia and get status updates. Today I received a call that Dr. Hodges had setup kidney studies and appointments for Julia in April.
It is strange to be in this place again of the hospital calling to tell us when all our appointments are before we even know we have them. April looks to be a full month for us at Brenners'. Julia will have 3 different urology appts, her oncology physical, her 3 month oncology scans, a geneticist appt, a GI appt, and a surgical appt. And these are the ones we know of so far.
On a positive note, we received word this week that our family will begin receiving services from KidsPath- our local palliative care center. This is such a blessing during our current trials. Both the children will receive counseling in a ChildLife-type setting. It has been so hard to know the best way to address all the complex emotional and intellectual needs both our children have right now (in addition to the physical demands). Everything is just so extreme right now that is hard to even know where to begin. We are overwhelmed. We will also have a pediatric home health nurse to help us handle Julia's medical needs and help walk us through this process. It is so reassuring to know we will have a liaison between us and all her specialists to help us provide the best care we can for her at home as we learn to adjust to our new realities.
Julia slept for 14 hours straight last night and woke up ready to do something new for a change. She wanted to get out of the house. We started in the backyard. It was such a beautifully warm spring day. She loved being in the sandbox with Carter and Grandpa.
She even tried her hand at swinging. Even though it hurts, she pushes through the pain. This is why these kids don't need physical therapy. They are their own PT! She has always, and continues to amaze me. The same toddler who was swinging on her belly just days after a radical nephrectomy with an 8in incision across her belly, was today pumping herself on the swing. That's Superhero Julia for ya!
She wanted to leave the house and go somewhere. We decided to give it a go. A trip to Feeney's makes everyone smile. She was so happy to be out of the house.
She didn't last very long and we were definitely pushing her endurance toward the end of our outing, but seeing this smile again was completely worth it. Even if it was only for a moment.
Thank you so much for all your kind words, cards, emails, care packages, meals, flowers, visits, and prayers for our family. We are so blessed to be so loved and cared for and thank God every day for all of you!
Julia wants to feel better and is trying to do her normal activities, but she's not quite there yet so she screams, and yells at people that try to help, and gets frustrated when she can't do something. Yesterday, I was doing school with Carter, thinking Julia would just watch TV or play with my mom. Not so much. She wanted to do her work, too. I knew that was a bad idea. I tried to talk her out of it with no luck. I decided to let her and keep it super simple, but even basic things like coloring and cutting were too much. It was not enjoyable for anyone involved. Her frustration and anger were flying in every direction.
Overall, she is feeling stronger each day and is able to move around more. We've been trying to stay away from the pain medicine as much as we can because of the bowel and bladder side effects it causes. She has done really well even without it. Her pain tolerance is incredibly high and she just amazes me in her ability to press on. We usually end up giving it to her only once or twice a day at this point.
We have been trudging on with her daily procedures. I have a checklist for every day and we work our way through. It has been a huge blessing having my mom here to help restrain her as we're doing things. She always reaches a point where she starts grabbing my hands or kicking, just out of instinct, and I don't want to hurt her or do any sort of damage. She is still having the same amount of pain. She still screams. She still resists and fights back. She hates every second of it. Her cecostomy wound site is still leaking around the clock. It still leaks stool and bleeds throughout the day and night. She can't stand having it cleaned or having me touch it every day for flushes. It still looks so raw and sore. I pray we see some change in it soon.
That is our biggest prayer request right now- for healing. Pray that her wound heals. Pray that we are nearing a point where we can actually begin to use it for its intended purpose. Pray that her colon heals with time and her body can function once again. Ultimately (besides staying cancer-free), that is our biggest goal right now. The doctors have done what they can do and now her body has to heal, her colon has to regain its muscle tone and original form, and her GI tract needs to operate in sync again. We know all of this lays in God's hands and we pray it is in Julia's future. As I go through the motions of all these painful procedures and hear her heart-wrenching wails, it is all I can think about... Lord, please let this all work.
Also please pray for preservation of Julia's urinary health. She has walked a fine line through this cancer journey and Dr. Hodges has done a wonderful job in being as proactive as he can to give her the very best outcome he knows how. Right now he is nervous. When I spoke with his nurse, Megan, last Friday and she began emailing him, he had many concerns. They had us set-up for at-home catheterizing in a matter of hours, in addition to his other concerns. Nurse Megan has called me daily to check on Julia and get status updates. Today I received a call that Dr. Hodges had setup kidney studies and appointments for Julia in April.
It is strange to be in this place again of the hospital calling to tell us when all our appointments are before we even know we have them. April looks to be a full month for us at Brenners'. Julia will have 3 different urology appts, her oncology physical, her 3 month oncology scans, a geneticist appt, a GI appt, and a surgical appt. And these are the ones we know of so far.
On a positive note, we received word this week that our family will begin receiving services from KidsPath- our local palliative care center. This is such a blessing during our current trials. Both the children will receive counseling in a ChildLife-type setting. It has been so hard to know the best way to address all the complex emotional and intellectual needs both our children have right now (in addition to the physical demands). Everything is just so extreme right now that is hard to even know where to begin. We are overwhelmed. We will also have a pediatric home health nurse to help us handle Julia's medical needs and help walk us through this process. It is so reassuring to know we will have a liaison between us and all her specialists to help us provide the best care we can for her at home as we learn to adjust to our new realities.
Julia slept for 14 hours straight last night and woke up ready to do something new for a change. She wanted to get out of the house. We started in the backyard. It was such a beautifully warm spring day. She loved being in the sandbox with Carter and Grandpa.
She even tried her hand at swinging. Even though it hurts, she pushes through the pain. This is why these kids don't need physical therapy. They are their own PT! She has always, and continues to amaze me. The same toddler who was swinging on her belly just days after a radical nephrectomy with an 8in incision across her belly, was today pumping herself on the swing. That's Superhero Julia for ya!
She wanted to leave the house and go somewhere. We decided to give it a go. A trip to Feeney's makes everyone smile. She was so happy to be out of the house.
2 comments:
Billy & Amber,
Know we are praying for you, your son, and of course . . . your "superhero" Julia.
We love you and are behind you.
In Him,
Chris & Teressa
Good gravy! Definitely always praying for not only Julia, but for the rest of you guys, as you learn together new things that you never thought you'd have to learn.
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