Friday, April 29, 2022
What a week
Tuesday, April 26, 2022
Bam
Sunday, April 24, 2022
Tube Free
Friday, April 22, 2022
Thursday, April 21, 2022
New Prayer request!
Today we get to celebrate Grace getting to have something by mouth. The NPO order was dropped. Now a clear liquid diet is allowed. The desired blue raspberry icee was not the first thing could she have but she was able to finally have one. The doctors wanted her to try sipping on water first. She was also able to keep down some warm chicken broth.
AND…. This is the exciting news! She was able to get out bed and walk down the hallway. She has been getting out of bed to go potty, and to sit in a chair but not actually walk far. So we are super proud of her determination.
Mia was able to visit Grace today. We entered the room with bags of gifts and activities to keep her busy from friends at the school. As Grace opened the gifts, she said, “ you know that song Happy? That’s how these gifts make me feel.” Grace was excited to play with her sister. Although Grace was a bit grumpy and didn’t finish either game they started. She was hangry… She doesn’t want chicken broth, she wants chicken nuggets.
Grace’s oncologist came in today. She said they had some of the results back. They are working on a diagnosis of a Wilms Tumor. They don’t know the stage or treatment plan yet. They have one more doctor that needs to look at it, and one more test. Then she said a team of doctors would come in to speak with us…I think she said Thursday…maybe …we are hoping to know as soon as possible so we hear what we want … It may be Friday.
When the doctor in the ER mentioned Wilms Tumor that first night, I started doing a little research on it. Here is the link to American Cancer Society about Wilms Tumor. https://www.cancer.org/cancer/wilms-tumor/detection-diagnosis-staging/survival-rates.html It has a really good survival for favorable histology….so this is our new prayer request… please please pray that it is has a favorable histology!!!!!!
I have been scrolling my photos to see if there was something I missed. Grace has a solid stomach, she has muscles. She is strong. But for real, how do you miss a 6inch 4x4 tumor?
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Do you see a 6inch 4x4 tumor? |
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She is strong, not sickly. |
This girl loves to play.. she rides bikes, climbs trees, jumps on the trampoline…she is a tough cookie. I can’t beat myself up for not seeing it… no one saw it… no one….
So my wonderful prayer warriors… please pray that it is has a favorable histology…. And thank you again for praying for our amazing Grace… I am so grateful for the abundance of support and prayers we are getting, not just for Grace but for the the whole family. Thank you for your kindness.
Wednesday, April 20, 2022
Brave like Batman
We have a lot of things to celebrate today. They removed one IV from Grace. They turned off the epidural but left the wires in to see if she could handle the pain. She still has a button to push to deliver pain meds through the IV that remains. Grace only pushed it twice and not even for her stomach, but because her throat hurts. Because she did so awesome handling the pain, they were able to remove the epidural. Yay! Two tubes gone in one day! Whoop whoop!
The also turned off the suction from the NG tube and are using gravity. If her belly can handle it they will remove the NG. However by the end of the day, they decided to wait another day. So she is still can not eat anything by mouth. She really wants that blue raspberry icee, she mentions it everyday. It is currently 6 am on Wednesday, April 20th, I just got a message from Bill with a picture of a very happy girl without the NG tube…. So now 3 tubes out- 2 more to go! I will post as soon as she gets the blue icee!
Today was a little emotional for Grace. She felt like she wasn’t being brave because she cried. We explained how being brave is be being fearful and doing it anyways. You can cry and still be brave.
There was some crying today , and the statement “ I can’t” came out of her mouth…. so we talked about how Grace is like Batman and how brave he is going to fight Mr. Freeze who is like the cancer . It is Batman’s fight. But Robin (mom and dad) is right there by his side, fighting along beside him. But Robin can’t do it with out Batman. It’s Batman’s fight…if Batman doesn’t fight then Mr. Freeze will take over Gotham City (her body). I told it’s it’s ok to cry. It’s ok to have a day where you just want to lay in bed and cry… One day though… Then you pick yourself back up and start the fight again.
The same goes for me, someone commented, “ I don’t know how you are doing it, I couldn’t” you know what I couldn’t do? I couldn’t stand by and not give it everything I have. I could not live with myself if I had any regret thinking I wish I would have fought harder. You could and you would. You might not want to imagine it… You might cry in the shower everyday, …You might beg God to let you trade places with her. But when your child is sick, you don’t give up the fight. You fight until you have given it your all.
I am truly overwhelmed by the outpouring of support we are getting. I want to thank everyone who has shared these posts asking for prayers for Grace. I truly believe in the power of prayer. Thank you for praying for my amazing Grace.
Tuesday, April 19, 2022
Ironic
This morning Grace woke up almost in a panic, it was like she was struggling to breathe. Her throat hurts so bad. She looked me straight in the eye and said, “Is it my fault. ” I cried for 2 hours straight…How do you explain Cancer to a nine year old?
I’m trying to be strong and not let her see me scared… but I can cry in front of her to let her know it kills me to see her in pain. She cried as they drew blood ( she really hates needles) from her hand today, looking to me for strength…. I just told her to breath and squeeze my hand as she looked into my tear filled eyes.
This morning was the first time she said her stomach hurt. She still has the epidural in. It should be blocking the pain. The NG tube (Nasal gastric tube that is coming out of her nose) had dark fluid/blood running through it. They believe it had suctioned/scraped her stomach lining causing irritation. She was given some Pepcid and some Valium.
The JP drain/bulb suction was emptied around 8am with 42cc, then again around 10am with 90 cc. That’s a lot. It had a small clot in the tube which stopping it from draining properly, so when the clot passed, the fluid was able to come out rather quickly. Now it is back to the normal drainage amount.
Her foley/catheter wasn’t draining urine this morning, so they took it out. The doctor said if she didn’t void her bladder in 6 hours they would do more testing. I am very happy to report she did go potty! (No pictures of that lol)
I know as I type this, I type the problem and the solution, but as each issue occurred, it was scary, waiting to find out what is going on, how to fix it, is she going to pee on her own? Today was a rough day. But I’m so proud of my Amazing Grace for powering through.
They gave her a goal to get out of bed 3 times. Grace shook her head no… the doctor chuckled… and asked,”are you telling me no” tiny pep talk reminding her that every time she gets up it will get easier and easier… and just like that my girl was mind over matter again… They said not to over do it and two times out of bed would be ok but they would really like three. You know my strong-willed girl did 3 and made sure to point it out.
She slept most the morning because of the Valium. When she woke up she was not in pain, all her tubes we working well, and she was ready to kick some booty playing war, trash and uno.I believe she was even giving a little sass to Ms Orndorff.
The breathing thing with the blue ball (yes that is my kindergarten teacher technical name for it) is her BFF. She feels better when she uses it. She uses it way more than they asked her to. They said ten reps once and hour. She has it in her mouth a lot. It’s almost like she thinks it has medicine. She says she needs it… she literally fell asleep breathing with it.
Jennifer sent me a memory from her time line. 11 years ago today, we were in Boston, 11 years ago, I was fighting for my child’s life, testing Jenn because HCM is genetic. Not knowing what to expect. That’s a little ironic don’t you think. A little too ironic..and yeah I really do think…. The song has a line that goes “ and as the plane crashed down, he thought well, isn’t this nice?” Like Grace yesterday, in the chair when she finally fought threw the pain , sat down and said,” well this is nice.”
This song, it may be my theme song for this hour. I can take an hour , while she sleeps and put my head phones on and listen to Alanis Morrisette. Because yes this is a little too ironic.
Sunday, April 17, 2022
‘Mom, I think she’s really hurt.” Were the words Jennifer said as I answered the phone.
Jennifer explained that Grace had taken Oliver, our 100 pound lab, for a walk. Oliver saw the neighbors dog, Sarge, and ran to greet him, wrapping Grace’s legs in the leash, knocking her to the ground. She fell on her left side pretty hard, busted her lip, scrapped her check and had a little rope burn around her ankle. Grace is a tough kid. Any other time she would have jumped up brushed herself off and said, “I’m fine.” Not this time.
I was visiting my mom in the rehab center. I kissed mom bye and raced home. Once home, I checked Grace over. Made her roll her ankle to check it, her lip looked fine, but now she mentioned it hurt to breathe. I had her lay flat and noticed her left side looked a little swollen, right under her ribs. When I went to touch it she screamed in pain. I told my husband, Bill, that I think I should take her to the Emergency Room to check for a broken rib. She got up to go and immediately started throwing up. Bill looked at me wide eyed and said take her.
We arrived at the ER around 8pm on Wednesday, April 13th. When we entered triage they took her temperature. It was normal. The doctor came in, she touched Grace’s side and suggested a CT scan because it could be a rib, or maybe her spleen. They took her back almost right away to do the CT. When she came back to the room , her temperature was 99. She was continuing to vomit. But she also just had her Covid vaccine the day before. So we just thought it was a side effect. The next time they took her vitals, her temp had gone up to 100.6, and the next time 103.
Around 11:20pm the doctor asked to speak with me, she took me down the hall, into another hall and into a small breakroom-like office. Hmmm this is different… That’s when it dawned on me …this must be bad. The doctor proceeded to tell me that Grace’s ribs are fine, her spleen is fine BUT…… they did find a large mass on her left kidney and it’s cancer. She mentioned Wilms Tumor, she has already been in contact with All Childrens Hospital in St. Pete. Grace threw up again, the doctor said you should go now, don’t wait. She called an ambulance and I called Bill.
At 1:32am on Thursday morning, Grace was loaded into the ambulance and headed to All Children’s. She was excited about riding in an ambulance. She wanted me to send this picture to her teacher.
Everything has happened so fast. I didn’t have time to think.
About 5:30 they were ready to put her in a room. Nurses and doctors were in and out. They were continuing to do tests and decided they would do surgery on Friday, but because she is an "add on" they didn’t know what time. They explained they will remove the tumor if they can. If it’s too big, they may close her up and shrink it. Then remove it when it’s smaller. They are planning on putting in a port at the same time, so she doesn’t have to go through more than one surgery.
Everything has happened so fast. I haven’t had time to think.
Grace had no appetite on Thursday. She only drank a tiny bit, and was continuing to vomit when she did drink. They gave her meds to reduce the fever and stop the vomiting. She was not in the best of moods because of her headache.
They have an app here called Mychart. All of her test results get emailed to me. So I was able to see the results of the CT and measurements of the Tumor 15.7cm x 11.4cm x 11.2cm… so in kindergarten teacher terms 6.18inches x 4.48 in. X 4.409 inches.
The doctors came in and let me know to expect to be here about 2 weeks. These doctors are SO amazing. They truly make me feel like she is their only patient. I know she isn’t, but they are so caring. They take time, sit down and make sure all our questions are answered. They have a 3 hour block slotted for the surgery but it could take longer or not be as long.
Everything has happened so fast. I haven’t had time to think.
A lady came in with a doll that has a port to explain what a port is and why it’s being implanted. The doll is a girl.. it is bald…..😢 They also brought Grace a lot of toys to play with. Grace doesn’t want to play. She is sleeping a lot. Grace is mad because she is going to miss Easter and the chorus concert .
At 12:30 in the afternoon, on Friday, they came to get her for surgery. However she was still running a fever. The doctor believes that it’s from the tumor, they gave her antibiotics the day before so he felt confident to proceed. We were able to stay with her until they wheeled her into the OR around 1:15pm.The nurses did a great job updating us. Around 6pm. Dr. Danielson came and sat down with us. He explained that Grace was still in the OR and would be there about another hour and a half. He explained the procedure. They removed the tumor and her kidney. He said it had ruptured but looked like an old rupture, so she still probably has little particles floating around. The tumor was pressing up against her pancreas so much that her pancreas had kind of rolled and was draped over it. He said it’s a very large tumor and she has a very large scar. He held his hands up almost like a football size. Bill later put it in perspective for me, he said imagine a 4x4 wooded post… now picture it’s 6 inches long. That is what they took out of her tiny body.
Dr. Danielson explained that because it ruptured it automatically bumps it up a stage. We do not know what stage of cancer or what kind of cancer until the biopsy comes back. However, we do know it won’t be a stage 1.
Now… I have time to think…This beautiful girl has cancer. Not might have… She has cancer. My daughter has cancer. I’m not sure what to feel. It doesn’t seem fair. I’ve already dealt with a child with a life threatening disease. I’m not mad. When Bill said he felt God was telling him to adopt, we prayed and prayed for the right children to be placed with us. I know this is God’s plan. I feel like it was God’s plan all along to give us this strong willed, kind, brilliant little girl . This little girl that is about to face the fight for her life. We’ve been here… not this child, not this disease but the fight for your child’s life. We’ve been here. I know this road. I feel like God gave her to us to give her a fighting chance. I feel like ok God.I hear you. I will do everything I possibly can to make sure my amazing Grace has a fighting chance. Don’t get me wrong. I want to cry. I want to UGLY cry. I hide the tears so this girl can be strong.
She has an epidural to manage the pain, and a tube down her nose to suck the saliva and fluid out of her stomach until her belly starts working right. She hates this tube. She wants a blue raspberry icee and is not happy that she can’t drink anything until the tube is out. She also has a tube hanging from the incision for drainage.
Every time the nurses ask, how are you feeling. She answers “Amazing”or “Never been better”. She was able to sit in a chair twice today for about 30 minutes each time. Walking to the chair hurts. She doesn’t want to sit up. She looks me in the eye… and I give her a pep talk. “We’ve got this Grace. 30 minutes sitting up in a chair to help your lungs. We can do this. It’s uncomfortable but we are fighting this. You can do this. It’s what we need to do to get you better.” This sweet stubborn girl, sits back in the chair and says ,”This is nice.” Mind over matter… we will fight this together baby girl.
I am amazed by our support system. Everyone has been so helpful pitching in to help with the girls, helping with sub plans, offering to sub my class, coming to sit with Grace so I can eat (She still can not have anything by mouth ,we won’t eat in front of her.) or just coming to keep me company so I don’t lose my mind. I appreciate all the wonderful people in my life. Everyone keeps asking how they can help. Right now just prayers. Please pray for this sweet girl, who already has been through so much.
The hospital has strict rules about visitors. Only two people in the room at a time. And only a total of 4 visitors a day. No children except siblings. So all the girls haven’t even been able to visit. Also, we can FaceTime, if Grace is up for it. She sleeps a lot during the day, but we will try to get back with everyone who inquires about visiting.
Grace is finished with radiation. Yay! We thought it was going to be 3 weeks of 5 days spread out throughout the chemo. However they decide...
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Grace is finished with radiation. Yay! We thought it was going to be 3 weeks of 5 days spread out throughout the chemo. However they decide...
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‘Mom, I think she’s really hurt.” Were the words Jennifer said as I answered the phone. Jennifer explained that Grace had taken Oliv...
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I am so glad and thankful the rest of the week was better than Tuesday. We figured out the trick to radiation, we give Grace Zofran 20 mi...