What a week

    On Tuesday, Grace was really struggling with drinking and eating. She had a horrible headache. She started to get dehydrated. They hooked her up to an Iv , gave her some fluids.. and like magic...she was better. She was feeling so much better they decided she could go home. WooHoo!!! They did have to adjust the lovenox dosage ...because she has lost 14lbs. She is down to about 59 pounds now. We also had a little hiccup with getting the needles from the pharmacy ... then all the i's were dotted and all the t's were crossed.. and we were finally able to go home... to a home with a broken air conditioner . We crashed at my moms house( who just got out of rehab on Monday). It was good that I could keep an eye on both of them. Senica Air hooked us up and now our air is running great. 

     Since we have been home, Grace has been able to keep food down. she struggles with drinking enough fluids, and is probably really tired of me telling he to drink. she is eating, but not like before. We both still hate the lovenox shots. I am getting better at giving them. Amazing Grace is becoming more  brave at receiving them,   especially if dad can hold her hand. 

       Remember the shirt, Mrs. Damm made for Mr. Twinkle? Well.. Mrs. Damm has been a wee bit busy… because it seems she didn’t stop. The shirts say Gold aforesaid Grace. It’s purple because purple is Grace’s favorite color. The gold lettering is for childhood cancer. There is also a golden snitch from the Harry Potter series, because she really likes Harry Potter. 

      Grace, Addie Hope and My granddaughter, Alison are all in chorus. They have been practicing songs for the chorus concert for months. Every morning, on the way to school, the girls would be singing their little hearts out in the van. Grace was so upset that she wouldn't be able to sing in the concert. Our amazing school decided to have Grace join her friends singing via zoom. One of the most amazing people ever, stood with the other children singing, holding an ipad so Grace could sing along. It was super sweet. Grace struggled a little bit because the sound was going in and out but she did a great job.... One of the songs is called I was here ....and its a cute song..when the girl swould sing it in the car. I would think how stinkin' cute... but now.. as I listened to Grace sing it...I BAWLED LIKE A BABY... 

    "I want to do something that matters, say something different,something that sets the whole world on its ear, I want to do something better with the time I've given , I want to try to touch a few hearts in this life , if nothing less than something that says I was here." Oh My goodness... this sweet baby fighting cancer sing this song... I want to do something better with the time I've been given... do nothing less than something that says I was here.” .. I’m not crying.. you’re crying… ok for real… I'm still crying. 

   

        Then they sang a song We're all in this  together... The tears wouldn't stop... and I was trying my best not to distract Grace who is just singing and trying to focus on the songs... So I just told her, I was crying because it's so beautiful...They picked these songs and were singing them for months before Grace was diagnosed... but these songs were so meaningful... The district made a little video .

      Grace had a couple visitors today. She loves seeing people. She hasn't learned yet, that its important to rest, and its ok to let visitors know that she is tired. So we might limit some visits to zoom calls instead until she understands its ok to rest. She read with Mrs. Bonnett (our principal), through zoom. She is just too stinkin cute. Mrs. Bonnett being the amazing person she is , told Grace, I'll listen as long as you want to read. 30 minutes later, Grace was starting chapter 6... LOL...She does love to read... I didn't snap a picture today but we did get one when she came to the hospital to play uno with her.

    I am so thankful and blessed to have such amazing family, friends, and people praying for Grace and the entire family. 

Bam

Grace has this incredibly thick curly hair. It's the type of hair that needs a lot of conditioner, and should not be brushed unless its wet. Here she is in this hospital bed, moving her head around, her hair is getting knotted, almost matted. Everyday, as I brush it , I add leave in conditioner, and now coconut oil in her hair, to help with the tangles. As I sit thinking how can I fix this I started scrolling Amazon looking for satin pillow cases, like the one she has at home... and up pops a satin sleep cap... and then a chemo head rap...... Bam....excuse me a moment while I pick myself up off the floor.. I am trying to buy a satin head wrap for my daughter's crazy hair that she won't need because she is going to lose it due to chemo... Bill stayed Sunday night at the hospital with Grace. I was only at the hospital about 30 minutes when the nurse came in ready to move us to the oncology floor. ... why weren't we already packed? We quickly packed up everything and dashed off to the onocology floor/section. The nurses were bustling around Grace...getting IV bags ready...and one of them said something to Grace about meeting the needle ninja who is the best nurse for accessing the port... I stopped and asked what are they giving her........ Bam.....woowa.. getting up off this floor is getting rough on the knees..... They were getting her port ready for the first chemotherapy treatment...WOW... it's happening... today if the labs come back good. The doctor came in at 1 ( our requested time) explaining the roap map... the treatment plan Reginmen DD-4A. This regimen will last 28 weeks...... Bam.... Let me stay down here a minute to digest this.......seriously 28 weeks...that is not a typo...it is 9 cycles of chemo over a 196 day period. Once a week we will come back here for treatment. They will be giving her 4 different types of medicine in different combinations each week. During the roadmap explanation, we paused as the needle ninja accessed Grace's port so they could draw blood. Bill spoke more with the doctor about the plan, while I tended to Grace's needs. I still have a couple questions that I have written down that I missed...Like the radiation treatment, according to the plan it looks like 3 weeks,(not 2) and my understanding is it is everyday M-F. I know that is not here but in Tampa.

Brea, the therapy dog entered as the doctor left. They put a sheet down so Brea could climb on the bed and sit with Grace. Brea was the sweetest. They showed Grace some of the tricks Brea can do..like speak, high five, sneeze and play uno. Yes Uno... we were quite impressed ourselves.

While Grace was being entertained by the therapy dog, they came in to teach us how to give Grace the lovenox shots. They took us to a different room, and had us each actually practice giving the shot. Clean your hands, clean the poke spoke, insert needle at a 45 degree angle, insert medicine, pause before pulling it put, remove needle and press hard on the syringe and a plastic needle gaurd pops up for protection. Got it. Both Bill and I did it like pros. Great news if Grace does well with the chemo treatment, we will get to to home on Tuesday, or Wednesday. So today is a training day.There are a lot of training videos to watch and a Childrens Oncology book to read. ( they actually went through the book with us) The labs came back great. They came in and gave her an IV bag of fluids. Then gave her some Zofran for nausea , Vincristine and Dactinomycin. I was shocked at how fast the meds were given. Seriously her first treatment of chemo was down in about 15 minutes. not painful. She ate a blue ice pop as the chemo bags dripped, then a oreo milkshake to keep the metallic taste out of her mouth. Anna from a support group Child Life came in to help explain to Grace that she might lose her hair. She also gave Grace Chemoduck. Grace named him Fred. He has a chemomport like her. Anna gave us a lot of other useful information about support groups. We have seen three different people from Child Life. They have been an amazing resource. She also gave us some Beads of Courage to do at home with our other children.

After dinner, Grace and I were putting together a puzzle when the nurse came in and said,"It's time for the lovenox. Mom, they want you to give it this time." Ok you can say it with me... Bam...that was like a kick to the chest from Ronda Rousey... I think I even felt the floor shake as I hit it this time.....I wasn't quite ready.. they trained us to do this ...but in the training its missing the live element of your 9 year old daughter who is looking to you for comfort with those big brown eyes... "Mom can I hold your hand?" she asked. "Not this time baby girl. I'm going to need them both." Poking a needle through skin is not as smooth as you think. The first layer is a little tough. So I poked her and it didn't go immediately in. I had to push harder. She is such a trooper. I kept apologizing to her, telling her I'll do it faster next time... but I'm afraid of jabbing her. Sweet girl that she is ...she apologized for crying because she could tell I was struggling with having to poke her. I'm so not a Pro...I'm sure I will get this before to long but right now...I hate this. Shortly after that, Grace began to feel queasy. She threw up at 10:10pm. The nurse came in and gave her more zofran and tylenol... Grace has been sleeping peacefully ever since. So here I sit rubbing my checks, recovering from the blows thrown at us today, watching this beautiful girl sleep... And being so thankful for these amazing doctors and nurses that are moving so fast to treat her...we are so thank for all the support we are being given. Although we may not understand God' plan .. we know he is in control. and tonight I'm singing along to Chumbawamba... "I get knocked down but I get up again... Cancer your never going to keep us down."

Tube Free

"I've got no tubes to hold me down to make me fret, or make me frown I had tubes but now I'm free There are no tubes on me" We are singing our own version of Pinocchio's song... Yay they took the drainage bulb out this morning. However, she has not been drinking very much so we are making small goals to drink four small bottles of water, so they don't put the IV back in to keep her hydrated. Her throat has still been hurting. They have been giving her a cloraseptic spray which has been helping a lot.

Yesterday she kept busy playing lots of card games, writing in her super cool Wreck this Journal, and putting together a puzzle. Puzzles are a tricky thing in the hospial. there is one table for food, when food comes the table needs to be cleared. So we did the puzzle after dinner and had the rest of the night to finish it. We also have been painting sun catchers. I can't tell you enough how much I appreciate everyone that has brought Grace something to keep her busy, word searches, books to read, pop its, finger nail polish, games... so incredibly blessed with our support team. Thank you...

We have also played some music. We need upbeat song suggestions. right now our play list consists of : Happy by pharrell Williams Sing your Praise to the Lord by Amy Grant thunder by imagine Dragons fight song by Rachel Platten Believer -Imagine Dragons Whatever it takes-imagine Dragons for example Skin by Rascal Flats.. great song... not upbeat.. she asked for Memories by maroon 5... I played it because she asked but I try to skip it... makes this momma cry... I want happy upbeat.. get out of bed and dance music. .. so,if you can think of some upbeat, happy songs please let me know. I also want to comment on what a ROCKSTAR this girl is... Last night and this morning, she did not make a sound, not even an ouch when they gave her the blood thinner shot. She has been choosing to have it in her legs, not the belly.It seems to be a better spot for her. Mrs. Damm made this awesome shirt for Mr. Twinkle. Grace loves it so much.

Also, If you have any great soup recipes, that you'd like to share that will help Grace get through Chemo. I would greatly appreciate it. I am just trying to get my ducks in a row now. Tomorrow Dr. Beaupin is coming in to discuss treatment. So those of you asking what can I do to help.. right now... I need happy, upbeat songs, yummy soup recipes, and prayers... Thank you... Thank you for continuing to pray for my amazing girl...

I usually am pretty good about putting my thought down on paper.... Today... I'm struggling....We received the pathology report. Grace has Stage 3, Wilms Tumor, Favorable histology.. which has an excellent survival rate... I am so thankful... the tumor did rupture...lymphnodes are clear, it did not spread... what does this mean for treatment... chemo and... radiation ... I know .. so much to be thankful for ... then why am I so sad over that.. honestly I really don't know much about radiation.. I didn't want to research it... it scares me...she is 9... I still don't want to reseach it... In my head if i didnt research it.. then she wouldn't need it... that didnt work out so well for me, did it.....being a mom is hard today... she is only 9... The oncologist, Dr. Beaupin is meeting with us on Monday to go over the treatment plan. The road map , she called it. After radiation, 2 weeks of radiation.. I really don't remember what else she said... Grace has a blood clot...She needs to start blood thinners... two shots a day in her belly for at least six weeks... possibly 12...

I dont want to seem ungrateful. I am so thankful, that this cancer has such a great survival rate. I am not looking forward to the treatment... Grace did get the last IV removed today, and only has the JP drain/suction bulb attached to her. She is up walking around, climbing in and out of bed... doing very well. once again, I want to say thank you for praying for Grace. She is an amazing kid. I am so proud of her bravery. She wants to know when the cancer goes away can she go outside to play....

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!!!!!!  

This is in the abstract statement from National Library of Medicine.. https://pubmed.ncbi.nlm.nih.gov/8712292/.      The letters FA is Focal Anaplastic/ DF is Diffuse Anaplastic  and WT is Wilms Tumor…..  s

So again… I ask that you pray that it has 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? 

Do you see a 6inch 4x4 tumor? 

I have looked and looked.   There a few pictures where it looks like she ate too much. But nothing … absolutely nothing to make me think… oh wow let’s go to the doctor.  However I did take her to the pediatrician on February 2nd for her annual Wellness visit…yes you read that right… WELLNESS visit…. Seriously we only went because she hadn’t seen the doctor in a year because she was NOT Sick…And in February… two and a half months ago…The doctor didn’t see anything either. 

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. 

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. 

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. 

At 9:57am this is what her NG tube looked like… 

   

At 6:15pm After the Pepcid  

 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.

She is not running a fever, the wet wash cloth is a comfort thing I think. She had it first with the fever, then a headache and now just because.   She says she’s hot.. but ya’ll it’s freezing in this room. 

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. 

‘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.