Hope for Hadley

08/16/2025

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08/16/2025

Hadley busted out of the hospital late this afternoon! So far, her only symptoms have been that she is a little tired and not wanting to drink a whole lot, but her headaches and vomiting have been very well controlled! Thank you Jesus! Her Ommaya tap today was a lot better than yesterday’s, as well! Hadley felt so good yesterday, that she stayed awake until 11:30 chatting about everything under the sun! We are so thankful that she has had a better experience this week, but there is still room for side effects to appear. If she doesn’t start drinking enough, we will need to go back to the hospital tomorrow and get her fluids to take with us in a back pack. Hopefully, with enough encouragement, we can get her to drink plenty tomorrow to avoid that. Please continue to pray with us that the negative side effects stay away!

Next weeks infusion will consist of a much higher dose of cells. They said to prepare for her to get pretty sick again, similarly to how last week went. We will continue with the same premeds we used this week and hope they help prevent her from feeling so bad for so long.

08/14/2025

Quick update after infusion #2!

The procedure itself went well, but Hadley did have a hard time relaxing and letting them work. We’re hoping that as the infusions and extra taps go on, she will get used to them accessing her Ommaya again. Immediately afterwards, she fell asleep in my lap for almost two hours. She woke up in great spirits, and we’ve been painting and playing uno ever since! She is complaining of still being tired, but so far, she hasn’t had any complaints of nausea or headaches. We’re hopeful this will continue through the night! Thank you all for praying for our girl!!! They’re working!

08/14/2025

Hadley was admitted last night and quickly made herself right at home! She fed Murphy her bedtime snack, and then everyone went to bed! They had trouble taking her temperature throughout the night because she was so cold. She also prefers taking her temp under her arm instead of by mouth, so that added to our issues. Her temperature has been fine though once they were able to get an accurate read. The team has already rounded this morning, and we have started a few medications already to hopefully prevent her nausea, vomiting and headaches from getting so bad this time. They were absolutely debilitating at one point last week, and we do not want that for our sweet girl. Hopefully these changes will help her to recover faster this week and allow her to enjoy her time more between infusions.

Please continue to pray that this treatment is the cure we’ve been believing in! She deserves the miracle of life, and we are doing everything we can to make it happen for her. Also, that her side effects are much more manageable this week! Her quality of life is our number one goal, but we’d also like more time, too!

08/13/2025

Hadleys headache returned last night, and they have been coming and going ever since. I can’t tell if if they are actually going away, or if she just says they are so she can play. She has also continued to be very tired, but her FOMO has kept her going! She doesn’t want to miss anything, and she just wants to go play everywhere around campus. She will play for a bit, then say she’s tired and ready to lay in the wagon. She’ll lay in the wagon until she sees something going on, and all of a sudden she wants out. I can’t tell what’s really going on yet, but hopefully this is just how her body is handling all of the inflammation caused by the T cells.

She will be admitted tonight to prepare for her second CaAR T cell infusion tomorrow afternoon!

Photo from yesterday! She was feeling good and sang plenty of songs all by herself during karaoke!

08/12/2025

Hadley has had a really good past couple of days! Her headaches have been managed well with scheduled Tylenol and ibuprofen, her nausea seems nonexistent, and she’s been playing with her brother and sister as usual! She has been a little more tired than usual, and even had a nap or two, but all is well and clinic is not concerned! She was accessed again this morning, and her admit date is scheduled for tomorrow this week. She will be admitted tomorrow night to secure her a bed, and then have her infusion on Thursday! In clinic today, we discussed multiple different medication changes we will make this week to hopefully help her out! She will have another migraine cocktail shortly after the infusion to help prevent headaches, and also add in a few more nausea medications that she didn’t get last week! We’re hoping these changes make this weeks infusion much easier on her body and she is able to recover quicker!

Please continue to pray for the T cells to do their job to the best of their ability, killing every cancerous cell in her body. Please also pray her side effects remain manageable, and she is able to cope with all of the stress and trauma she has been experiencing. We do our best to minimize it all, but many things just cannot be helped. Thank you to everyone who remembers our sweet girl, and the rest of us!

08/10/2025

After a medication change and being able to tolerate a breakfast that consisted of Dr. Pepper and a plate of pickles, Hadley was discharged around lunch time today! We are hoping that having scheduled ibuprofen and Tylenol around the clock will allow her to remain headache free! She is set to be admitted on Tuesday night again, to prepare for her second infusion on Wednesday!

08/10/2025

When Hadley first woke up this morning, she said her head was still hurting “just a little bit, but not as bad as last night.” But after she had a little time to wake up and adjust to starting her day, she said that it didn’t hurt at all anymore. That didn’t last for long, and she just informed me that her head is hurting again. So much back and forth, I’m getting whiplash and I know she is too. We were hopeful to get out today, but just won’t know until after the team makes rounds. Shes currently resting in bed, holding a heat pack to her head and watching her iPad.

Picture from last week when Pastor Corey came to visit and pray with us before and after Hadleys T cell infusion! We’re so thankful he made the quick trip to be there and support our girl!

08/10/2025

Hadley has been admitted again for a headache that we can’t seem to get to go away. Last night and throughout the day she complained that her head “hurts just a little bit,” but was able to play and move through the day as normal. This evening it became a little worse, so we called and they said they wanted to see her and likely admit her. We packed a few things and headed to the hospital and they had a room ready by the time we walked over. The plan for now is to try a migraine cocktail to see if that will alleviate her pain, if after an hour or so she’s still having pain, she will have another Ommaya tap. Please continue to pray for our girl to feel better! Pray that she will not need another tap tonight and that she can get much better rest tonight than she did last night! Thank you all for remembering Hadley in your prayers! It really means the world to us!

08/08/2025

Last night, Hadley was able to get another dose of the phenergan IV to help with some nausea(no vomiting!) she was having. It also helped her finally get some restful sleep! She also began drinking again last night, and made me wake daddy up a couple times to go get some fresh capri suns! She woke up in good spirits this morning, and was able to swap all of her meds from IV to by mouth! The team was happy with how much she improved over night and they discharged her just after lunch time! As usual, once out of the hospital her spunky personality showed back up and she began eating again, too! She has been alternating between playing and resting on the couch all afternoon, and snacking on her favorite CFA nuggets! Thank you for all of the prayers this week! Please keep them coming for the days and weeks ahead! We don’t know when the side effects will show back up, even if she’s doing amazing at the moment. She will be admitted again tuesday evening to prepare for her next infusion on Wednesday!

Quick picture we took after we stopped at the gift shop for a happy before heading back to housing! And yes, we absolutely pack our own popsicles for inpatient. Sometimes that is the only “fluid” she will consume.

08/08/2025

After sleeping most of the morning and afternoon, Hadley woke up without a headache and with her nausea very well controlled. She was able to stay awake in the bed for a little while until this evening when she was just too tired again. She also began complaining of another headache while the Tylenol was infusing through her line. We’re hopeful it will kick in soon and help her out. She’s trying to sleep again, but is very restless from the headache. Please continue to pray for her side effects to remain under control, for her comfort, and for the T cells to be killing each cancerous cell in her body.

Picture of Pickles with the nurses this afternoon learning how to chart. She loves to act shy when she meets someone, but quickly warms up to them! Banks was somewhere behind the camera playing with his new dinosaur he created on the 3-D printer today.

08/07/2025

Hadley had multiple episodes of nausea and vomiting throughout the night and this morning. It became frequent enough that we moved her Ommaya tap up to 9am this morning. They were hoping to get 8-10mLs of fluid off, but were only able to get about 3mLs. We were hoping to get enough fluid off to decrease her ICP but it doesn’t seem like we were able to. Her Ommaya was starting to deflate as they would try to get any more. She’s still having some vomiting, but they decided to try an IV dose of phenergan to see if that would help her. She’s resting now, though not very comfortably. Her temperature has been running a little high, but not yet a true fever. We know we will for sure be here another night, but hopefully she will be feeling much better by tomorrow and we can go back to housing. Please continue to pray that her side effects are better controlled soon and she gets to feeling like herself again.