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Susan's Fight against Hodgkin Lymphoma

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Susan's Fight against Hodgkin Lymphoma

This page will help you follow Susan's journey during her fight against Hodgkin lymphoma.
(1)

11/29/2023

Thank you to everybody that helped get us to Susan's PET scan today. 🙏🥹 I know this is late cause we spent time together and even had an unexpected Christmas party at the Ronald McDonald house! 🤗🎄🎅🦌🎁
We have to come back in 6 weeks for another PET scan.
Her last pet scan was after her second round of chemotherapy. Today's PET scan showed us three lymph nodes in her neck, though they are the same size as they were at the last PET scan, they are now reacting as 3.2 instead of reacting as 1.0. This could mean regrowth but!!!
Doctor said this could be caused by a sickness or infection that we may not be aware of.
So we will be back in 6 weeks for another PET scan to double check on things. We will plan on being back on our way home tomorrow since she won't be getting her port taken out.
We ask you continue praying and sending good vibes Susie's way. 💜

11/27/2023

Hello everyone. As y'all are aware Susan finished her chemo treatments and we are due back for her PET scan tomorrow morning. This PET scan is to check to see if there has been any cancer cell regrowth.
Susan's step grandfather has made it very clear he will not give us any of her donation funds for us to see her doctors in Dallas. It's hurtful but we've already taken steps in the legal direction.
But unfortunately that will mean the checking account he has the funds in will be frozen until after court. Which could be months.

I know y'all have all done so much for us already! I have to ask for your help once again so we may leave Amarillo tonight and get her to her scan appointment.

If the scan looks clear they will be scheduling a date within a week to get her port taken out! And this will all be over!

If the scan shows regrowth we may have to try radiation therapy.

Any little thing given will help tremendously. 💜 Y'all are a blessing to Susan.

Please share so this reaches more angels like y'all 💜

10/23/2023

My sweet girl lost a tooth!! She has another loose one under the one she just lost!! Both areas have the next set growing through already!

She had me write a note and, with a blushed giggle, she wondered if the tooth fairy she gets will look like "Ron Johnson" (Aka the Rock) lol

09/27/2023

My favorite fall outfit Susan ever had!! 💜💜

08/31/2023

So sorry for the late update!
Thanks to all of you and more, Susan had her first appointment with her new doctor in Dallas! She absolutely adores the new clinic and her doctors! We didn't have much free time but we did have a little time to get some pie and see some murals. We're back in Amarillo getting a few things situated and then we will be leaving Amarillo again on the 3rd.
From the lab work her accounts and hemoglobin are low so on Friday I'm taking her to the hospital here to have her blood checked just to make sure she doesn't need a blood transfusion before her chemo next week.
She's been very tired and has had little to no appetite. She lost 3 lb in the past week and a half. Though today she did eat more and was awake more often! So that's amazing!
At her next appointment in Dallas she will be doing a pet scan right before they start her 3rd round of chemo. Depending on those results is how we'll know if she'll absolutely need the radiation after she completes the five full rounds of chemo. So next week I'll be able to update y'all on if this fighting journey is soon ending or if she has to fight a little longer.
After talking with the doctor in Dallas we have also decided that we are going to try being there for 2 weeks and then coming home for 2 weeks. Hopefully this will all work out great that way we're not away from most of the families for too long!

Once again thank you for everybody's love and support we really couldn't have done this without you!

All of y'all are a huge blessing to Susan and her family 💜

💜

08/20/2023

Susan's favorite teacher came to see her! Brought a gift basket and lots of love!!
Thank you Mrs. Reed! 💜💜💜

08/17/2023

Round two of chemo done! We have been released!

Susan is tired but handles everything like a champ! Did lots of crafts and paintings! even painted some magnets for the fridge!

Her counts are high today! So we're using this time to see some family!

💜💜💜

08/14/2023

Ronald McDonald House for the win! Susan absolutely loves it.

She got her port accessed today and her second round of chemo starts at 7 am tomorrow. Then in 2 weeks we are off to Dallas to finish chemotherapy there and possibly radiation.

We will keep y'all updated!

Also we are in need of a vehicle. If anyone knows of a reliable, cheap vehicle please let us know!

08/13/2023

A few pictures from the benefit held for Susan.

She had a blast.

Thank you again everyone that came out!

08/06/2023

Guess whose ANC's went up from 150 to 400 over night?!?! 🥰 her neck is healing, but her mouth is still bad. Even the edges of her tongue are messed up, but they sent us home with magic mouthwash to numb her mouth that way she can eat. It works really well so far although I feel like her mouth gets worse after she eats with her whole mouth numb. I think while she's eating she's biting down on her tongue and sides of her cheeks and not realizing it. They said that we could use orajel but it numbs it too so does anybody have any other suggestions?! Maybe something that doesn't numb it completely?

She is loving being free!! She was rushing us out of the hospital! 😂

Her counts aren't where they want them so she'll be secluded for a while.

pray for this sweet girl 💜

08/04/2023

So Susan has not had a fever since she was admitted.
When we came in the healed incision from her biopsy was red on one end and a little swollen. After a couple hours it turned purple and got a lot more swollen. Somehow she got an infection in it, though it's not hard for any kind of bacteria to make a bad infection when your neutropenic.
Her first night being here her ANC's were 22 (normal range is 200 to 500) so her immune system was very very down. The labs from this morning show that her ANC's are now 116!! So she's getting there!
Doctor said to plan on staying through the weekend so the earliest we will be out of here would be Monday! Hopefully no later!
They've been keeping her on broad spectrum antibiotics. They have now started an antifungal just because she has started getting very bad sores inside of her mouth and we want to make sure that we prevent any kind of fungal infection.

She's doing good! She's on her way up and just as goofy and sassy as ever! 🥰

We also got a visit from Sawyer's Wish Foundation, and she got to pick out three different sheet sets! She absolutely loves them and is very thankful!

I want to thank everyone who has helped out and gave love and support! It's not an easy road but having the right people stand around you really helps. 💜

08/02/2023

Susan had a great 4 days out of the hospital, though she was admitted yesterday due to a fever.
On Monday she went into the clinic to get the last chemo injection for her first cycle of chemotherapy. She did great until yesterday morning. She started having a low-grade fever, but by 3:30pm it was worse.
They are giving antibiotics just in case of infection, and the blood work showed she is neutropenic. Her fever went down last night and still had not returned so that's good news. The doctor said it could be a fever caused by the chemo injection on Monday.

Keep my baby girl in your prayers 💜

07/25/2023

Susan needed a little proof that her hair cut wasn't just for boys. Momma (or Mother as Susan says) decided to help her out 💜

After the blood transfusion last night Susan was a whole new kid. She was the most happy and energetic she's been in weeks. 💜

She's on her last bit of chemo for the day, but she has been awake since 5:30 am, so she definitely needed some sleep.

She hasn't had any bad reaction to the chemo so far. The nurse said two of the kinds of chemos have a delayed effect so she's probably not going to feel too great tomorrow. Please keep her in your thoughts 💜

I hope she loves her Mother's hair just as much as I love her's. 💜

07/24/2023

Susan got her hair cut today 💜😍

Also...her blood counts are low so they're going to be doing a blood transfusion here within the next 30 minutes.

Thank you all for all the love and support 💜

07/22/2023

Susan's out of surgery! she's sleeping it off in recovery! I can't wait to go back and see my baby girl.
Surgeon let us keep the old port! Susan will loveeee this lol
💜

07/22/2023

Susan got taken back to surgery about 20 minutes ago.
Pray for my princess 💜

07/22/2023

Susan's port has to be removed.
The port is pinched between her clavicle and a rib.
They said she will still start chemo on Monday, but she has to get a new port put in tomorrow. They're trying to get the surgery done at 12.
We will keep y'all updated.
Please pray everything goes well for this baby.

07/21/2023

Susan eating her Cheetos and fruit cup. After this we got her to eat two pieces of pizza and she has been drinking! Fever is still up and down. She has short bursts of energy where she's happy and then she gets drained and cranky. Then she takes a nap.
Port has gone back to being finicky. They will do another clot buster as she needs more labs taken.
She also took two walks today and was begging for a third even though she had fever.
Tomorrow we will hopefully get her some pj's that button up as she refuses to cover her port.
Pray for this sweet sassy princess.

07/20/2023

Late update on Susan.
Her surgery went great on Tuesday. She has some pain in her shoulder but the pain medicine helps tremendously.
We met with her Oncologist this morning and was told she has stage 3-B Hodgkin Lymphoma. It's in her neck, chest, stomach, and spleen. Monday chemo starts and there will be 6 different kinds of chemo and one steroid she will be getting within 7 days. Then she will have a 3 week break and we will redo all of the scans. If most of the them shrink to a 1 or 2, then they consider her as in remission, but she will still repeat the process 4 more times. If they don't shrink that much we have to take her to Dallas for radiation.
After her appointment this morning, she got a fever and we were admitted into the hospital immediately to check for infection, though it could just be because of the lymphoma it's self.
They had trouble accessing her port because it is so new and sore, but they finally got it. They can only get fluids to go in, but can't get blood to come out. Her fever is up and down, but they're watching her close, and doing what they can to figure out what's happening.
Will keep you updated.
💜
First picture: Before surgery
Second picture: After surgery
Third picture: Her snoozing away tonight

07/14/2023

Ok we got done with the PET scan this morning. They said we might have the results Monday or Tuesday. Again, those were to see what stage she's at.
After appointment I got a call from Northwest Texas. They have scheduled the surgery to get her port put in. Tuesday the 18th at 9:30 am. We have to have her there at 7:30. Dr. Jason Nigrgiotis will be doing the surgery, and they said it'll take 30 minutes to an hour. When they're done they're going to do a chest x-ray to make sure they didn't puncture a lung. (she said she has to tell people cause "It is a risk, but it doesn't happen often.") She said that the medicine that they're going to give her is going to make her groggy throughout the day so we have to keep a close eye on her.

Now on Tuesday when I talked with her oncologist (Dr. Bhaskaran) she said depending on what stage Susan's at is how we're going to know if she's going to do chemo (stage 1 or 2) or radiation (stage 3 or 4) therapy. She said that hopefully as soon as Susan gets the port in we're going to admit her straight in to start chemo. (she didn't mention anything about what happens if we have to do the radiation)

I'm going to keep you updated. As soon as I learn something new, y'all will know.
Love you guys and we appreciate the support 💜

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Amarillo, TX
79110

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Susan's out of surgery! she's sleeping it off in recovery! I can't wait to go back and see my baby girl. Surgeon let us keep the old port! Susan will loveeee this lol #SweetSusansJourney 💜 #SassySusansJourney