Summer Chylewski update

Summer just went back for surgery finally getting a Baclofen pump hopefully she will finally get some relief her muscles have been so tight and her clonus has been driving her nuts.

It has been a long past couple of days. Thursday Summer was acting a little fatigued as the day progressed she was becoming unresponsive and not wanting to wake up with me calling her name quite loudly and doing sternum rubs, she wouldn’t stay awake very long normally when this happens, it typically has to do with her shunt, so I loaded her in the car and drove her down to CDH once arriving and waiting in line to check in peroxygen was kind of bouncing back-and-forth between high 80s to low 90s. They got us to the back very quickly to a triage room within just a couple of minutes. She was taking only approximately four breaths per minute they wound up immediately making the decision that to protect her airway that we needed to put her on a ventilator immediately amazing medical team acted very fastly and secured that airway battery or blood test, as well as x-ray and CT scans to rule out any type of infection as well as a shunt malfunction. Still uncertain of what exactly is going on with her, they were assuming that we might need an MRI so because of that they decided that they had to transfer us downtown to Laurie Childrens so they would be able to reprogram her shunt. They did have her heavily sedated so she would not pull out her tube or startled. Lori‘s personal transport team of six people showed up to transfer us downtown. Our driver was amazing. Getting us downtown in just a short hour drive in awful rush-hour traffic even with all the idiot drivers not even attempting to get out of the way with lights and sirens blaring. Once arriving to Lori, we were admitted to the PICU the team of Doctor there Decided to slowly start weaning her off of all sedation meds so they were able to check her mental status. She started to wake up and was able to remain calm even though not extremely happy to have a tube shove down her throat, but who would be she was able to sign to me it was a very long night with people in and out of the room. Probably every 15 to 30 minutes. Needless to say this mama only got two hours asleep but luckily she started to be able to breathe over the machine and take more breaths on her own by 5 AM, they were able to excavate her and she came off of the ventilator. Unfortunately we still have zero answers to what caused her to go into respiratory distress through all the labs and test they put her through came up negative but she is definitely a fighter. Because she made such a quick recovery, they discharged her today and now she is home resting comfortably. Frustrating, not having answer and not knowing what caused this, and not knowing what to look for.

Last day of proton, radiation therapy

Summer finished week one of proton radiation, five more weeks to go. She has been sleeping most of the day but that could be because of her being sedated for treatments.  They say by week three she may start to feel some discomfort like a sunburn were the radiation ☢️ enters. She will most likely loose hair also where the treatment is taking place.  besides going to radiation five days a week. She also had two different ultrasounds on her legs, which was a pain in the arse only because they could not correlate them with the treatment swear to drive all the way back home to drive out later that night on two separate occasions to get the scans done would’ve been a lot nicer if the original order was written to do both left and right leg. Hopefully no news is good news since she had the right leg scan today and that was originally where her DVT was. Starting next week she’s going to move into the first timeslot for treatment so we have to be at the facility by 6:30 AM. Hopefully then will get home in time and then maybe this very sleepy mama can possibly take a nap but let’s be real that’s probably unlikely. 


Haven’t posted for a while. Summer had two back to back surgeries for a tumor resection of the brain stem since then her two month follow up MRI showed tumor progression for some reason even though this tumor has been biopsied as a low-grade glioma, the brainstem.  it is behaving as though it is a high grade her amazing neurosurgeon originally thought. If it was to grow back, he would just go back in and do some type of surgery, but since it has grown back very quickly, they are now wanting to move in with proton therapy radiation Summer went animate with the radiology team had her CT mapping done as well as her “ superhero mask” made. Meanwhile, the CT scan as well as a follow up MRI showed a increase in her ventricles, and because of this her neurosurgeon wanted to go in and do a shunt revision which took place yesterday. It wound up being that the shunt catheter was clogged so he went ahead and replaced that her pain has been, tolerable  with pain meds. The plan is to hopefully go home later today. And then start radiation in a week for a total five days a week for six weeks. Summer is definitely a rockstar. Hopefully after all this she can finally catch a break. It has definitely been a roller coaster for the past year. 

I have reached 500 followers! Thank you for your continued support. I could not have done it without each of you. 🙏🤗🎉

From a large brain stem tumor that was growing at rapid rates talking about proton therapy, radiation, and the need for surgery.  To two brain surgeries a week apart. And several CT scans and MRI’S getting the call today they happy with the results from surgery and as of right now Summer does NOT need to do radiation ☢️ at this time!!!!!!! Now the real work begins Summer was transferred to  to the rehabilitation center to do intense, physical, occupational and speech therapy She has set her own goals on what she wants to accomplish during her stay here. We don’t know how long it will be have to see how nice insurance is, but as long as she is making good improvement they will extend our stay.
Summer wants to say thank you to everyone that has been praying and sending there well wishes. 

Summer is still in a good amount of pain but hanging waiting on MRI to let us come down for post surgery scan. She wants her pasta, but can’t eat yet. She had been NPO since Wednesday at 7 PM We haven’t seen Pt, OT or SPL yet hopefully they can stop by tomorrow. Hopefully 🤞 she will go home on Monday but that depends on a few things pain management and what the therapist have to say. She is definitely a rockstar.

Summer is in surgery to remove a brain stem tumor that is believed to be causing her increased weakness. Her surgeon said it could take anywhere from 4-6 hours to complete. After she will be  admitted to the hospital for about four days. Then possibly heading over to Marianjoy for intensive rehab or released home when she is fully recovered. She is to start proton radiation therapy for approximately six weeks. 

Summer has a hypothalamic-optochiasmatic glioma as well as nonenhancing infiltrating signal abnormality involving the bilateral basal ganglia, thalamus, brainstem, pons, pontomedullary junction and cerebellum she started carboplatin/vincristine on dec 2013. She changed to monthly carboplatin on may 2014 due to myelosuppression, but she continued to have problems with myelosuppression and was switched to weekly vinblastine on August 2014. She completed treatment on February 2015 of weekly Vinblastine. Stable MRI as of January 7 2017 but worsening vision in left eye. So they started her on Avastin and Irinotecan per January 2017 completing treatment January 2018. Surgical resection of cerebellar lesion on November 2018. January 2019 significant tumor progression showed on MRI in addition to worsening vision. She was started on monthly Temozolomide, but very significant myelosupression so treatment stopped as of April 2019. Started on trametinib (MEK inhibitor) on June 2019 Last dose of Trametinib on September 2020, discontinued due to fatigue, rash, and general malaise. Concern for both radiographic and clinical tumor progression and her team started her on clinical trial on December 2021, with combination of everolimus and trametinib. She came off trial per her request November 2022, and restarted monthly Carboplatin on December 2022.

Summer last week Wednesday trying to get some extra Z’s while she gets her chemotherapy 

Big shout out to my newest top fans!

Usti Chunestudy

We are home Summer had a rough night was very nauseous most of the night and was coughing a bunch. It’s hard for her to clear her  throat. It’s going to take a while for her to get over this. She is recovering from her port surgery. It’s just a lot for her. Surgery chemo and being sick. 

Summer’s port surgery went well she has been sore for the last few days. Also had her first dose of carboplatinum. I did need to bring her into the ER yesterday because of a fever. They sad she tested positive for parainfluenza1 which is like a bad cold for most. Her team wanted us to be transferred downtown so they can monitor her symptoms hopefully we will be home soon.

Looks like December 7th is the day for surgery to place a port then to start chemotherapy right after. Not sure how it will go last time doing chemo the same day was very difficult on her.

We think we finally figured out why Summer has been so sleepy and getting weaker. There is a different tumor at the base of her brain stem that has been slowly growing even on the MEK inhibitors which she stopped on October 20th dew to the episode to were she was on a breathing tube. Summer mad the decision to have a port put back in and start old school chemotherapy again. Most likely she will be on monthly Carboplatin. She was on this back in 2010 at the time they were targeting the ONG so because this is a new area they said it’s okay to use something we did in the past. The goal is to have this all happen sometime during the week of December 5th. So proud of Summer standing up for and speaking what she wants to do. Happy the doctors are lessening to her and respecting her wishes.

Summer is off all oxygen Support. They took out the ventilator then put her on high flow 30 letters oxygen down to 20 then finally took her off completely. She has been signing to communicate with me. she has a headache right now so they gave her some Tylenol and has me rubbing her head. Trying to take a little nap hoping the Tylenol kicks in soon.  what a difference in just 24 hours

Thank You 🙏 everyone for all your prayers So far no real answer. She dose not have any internal bleeding from her waist up so that doesn’t really explain why her hemoglobin is so low. She is still on a ventilator and they now have her only lightly sedated like in a twilight instead of heavily sedated. Once she shows she is doing better like 90% breathing on her own they can talk about her coming off the vent. They still want to grab a ultrasound of her legs to make sure the blood clot didn’t return. 

Happy 15th Birthday (5/6/07 )🎉🎂 to my very special warrior 

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