April 26, 2019
Apologies for the late update tonight. I took a nap with a bad headache and didn't think I needed to set an alarm (I seriously do set an alarm to make sure I update around the same time!)
Julia's had a decent day. Last day of this round of chemo. Pretty barfy (mucus). Really tired. Had a visit from both Speech and OT today. They tried to get her to say things, but she only wanted to turn the pages and fiddle with the books =) They did ask her to find very specific things (Elephant in bath tub) and she did great!
Oh! And apparently this smart little cookie knows what time of DAY Peppa is on TV! I can't believe it. Apparently TWO TIMES today, she started pointing to the TV (that was off) mouthing "Peppa, Peppa, Peppa", and when the TV was turned on - it was Peppa! She did it once for Reed this afternoon, and once for the nurse in the middle of the night <3 I mean, I guess it could be a coincidence... but if it's not... super smart baby! Can she read a clock? Who knows!
That's all I have today. It's late and I want to get this up.
I've been slowly working on a daily summary of everything that has happened since she was admitted on Halloween. Lots of new followers don't know her whole story and have lots of questions. I want to put a page on her website with these short daily bullet points, and I figured I'd share here as well if anyone is interested. (No need to read if you've read all my updates - no new information). But I was motivated to finish this summary after comparing her MRIs yesterday! Now that I know how COMPRESSED her brain stem was in early January, her rapid decline makes sense. And now that we see how much the pressure was releasing its grip throughout February and March, her miraculous turn-around and quick regaining of all abilities makes sense!! (I have limited formatting options in Facebook, so I divided it up by month/week. hopefully that's clear)
Fair warning - January summary might be difficult to read. Very sad time. But... we know how it ends up to this point! And honestly think I blocked out most of what happened. Reading some of my own posts I was like... wow... that did happen. She went through so much in such a short time. It's unreal.
Video of HAPPIEST BABY EVER included in comments. Day 5 of chemo can't keep this one's spirits down <3 <3
******************************* ~~~~~~~~ JULIA'S STORY ~~~~~~~~~ *******************************
OCTOBER Oct 30 - Brought to ER with a stiff neck. Otherwise a normal toddler. Oct 31 - Mass found on brain via CT scan. Julia is 22 months old.
NOVEMBER ** Biopsy and waiting ** Nov 1 - Julia sedated with breathing tube. No one knows what the mass is. It's bleeding. Told MRI is 'unusual'. Nov 2 - Biopsy through back of throat. Still sedated. Initial biopsy results reveal it's not an infection. Neurosurgeon said all teams are confused - sample sent for many tests. First time they mention cancer. Nov 3 - Julia wakes up from sedation. Neurological checks start due to pressure concerns. Visually, Julia looks very ill (pale, sweaty, weak). Nov 4 - Julia awake and interacting. Not moving neck at all. Starting to show interest in kid things again - coloring, play-doh. Going to be transferred out of PICU, but not sure where since no one knows what it is. Nov 5 - Told results will be delayed. All initial tests inconclusive. Transferred to oncology floor. Nov 6 - No results. First time seeing other children with cancer on this floor. Praying Julia isn't one of them. Reassured that this floor is for all neurological issues, and they still don't think it's cancer. Nov 7 - Tissue sample sent to neighboring hospitals. Still don't know. At this point I've accepted it's cancer, and just hope it's a favorable one. Received news from hospice that my father is close to passing (from cancer).
** Find out it's cancer, make plans ** Nov 8 - Father passed at age 64 to melanoma. Worst day of my life. Nov 9 - New worst day of my life. Results. AT/RT Tumor - extremely aggressive cancer with high mortality rate. Low survival with treatment. No survival without. Neurosurgery debating if surgery is possible due to location near brain stem. Diagnosis can't get much worse. Nov 10 - Research shows this cancer is extremely rare: roughly 30 kids diagnosed a year. CHOP sees about 4. Julia gets tons of testing done. Nov 11 - Julia acting normal, looks very ill. Nov 12 - Many teams being brought in to figure out if there are options. Nov 13 - CT scan: cancer has not spread. Doesn't increase survival, but doesn't lower it. Will get word on surgery tomorrow. Julia eats first peppermint patty since biopsy (her favorite). Nov 14 - Julia's right eye goes cross-eyed. Neurosurgeon isn't surprised due to tumor location. Left eye can no longer look further left than center line. Surgery scheduled for Friday. Surgery will be long and complicated. They will remove much of the bone (tumor is wrapped around C1 vertebrae). A follow-up fusion surgery will be required as the spine will be destabilized. She will be in a halo neck brace for at least 4-6 weeks.
** Two major surgeries ** Nov 15 - Lumbar puncture. Chest port installed. Awake - fussy but OK. Major surgery tomorrow. Kissed her goodbye. Last time I heard her voice. Last time I picked her up and hugged her. Last time she was my happy little giggle bug. Gabriel's first birthday. Nov 16 - Father's funeral. Julia had successful 11-hour surgery. Surgeon pleased with how it went. Julia will remain sedated all weekend. In halo neck brace. Nov 17 - Got surgery details. In critical care. Were able to remove most of tumor, but it had already punctured through into spinal column. Did not attempt to touch that part. She handled surgery very well. Expect her to be fully sedated for several days. Entered through back of mouth. Tongue compressed so much it swelled and fully filled her mouth. Breathing tube literally stitched to face for safety. Halo bolted to skull with 8 titanium rods. Required several fat grafts from belly and thigh to re-form back of mouth. Nov 18 - Sedated. Swelling severe. Transfusion required. Fusion surgery scheduled for tomorrow. 5-6 hour surgery as it's not common on a child. Expect her to have significant reduction in movement - most likely will be unable to nod/rotate head more than a few degrees. This is permanent. Nov 19 - Fusion surgery went well. Fused C4 up through skull. Halo will remain for at least 6 weeks. Swelling severe. Nov 21 - Swelling starting to go down. Stopped her paralytic med. Decreased sedation in interest of seeing her twitch (want to confirm she CAN twitch). Comfortable. Will be asleep for several more days. Started feeds through tube.
** Issues coming off sedation ** Nov 22 - Thanksgiving. Reed and I very sick and staying away (likely caught something at father's funeral). Have not seen Julia since surgery. Nov 23 - Julia stable. Saw her on FaceTime via nurse. Shocking. Having GI issues - messing with medications to fix. Nov 24 - Team is unsure of how to wake Julia up. Problem: if she comes out of sedation with breathing tube down her throat, she will gag and jerk (normal). She can't be allowed to gag/jerk due to delicate/critical neck. Halo will remain for 3 months. Considering leaving her sedated to heal from fusion. Nov 25 - Vitals stable. More CT scans / ENT checks. Still discussing how to wake her up. Extremely weak due to minimal nutrition and back-to-back major surgeries (and cancer). Nov 26 - Swapped breathing tube to smaller, more flexible breathing tube in interest of waking her up. Has been fully sedated for 10 days. Nov 27 - Found out Julia does not have ATRT. She has Clival Chordoma, an even more rare cancer. CHOP has seen 4 cases ever. No idea how to treat it. Change in diagnosis came after full studies completed (take time); apparently ATRT and Clival Chordoma are biologically nearly identical. Reed finally well enough to visit. Julia, under full sedation, responds immediately to Reed's voice: eyes fly open and heart rate shoots to 200s. Nov 28 - Forced to deepen sedation as she kept waking up when she heard Reed (caused her to gag and jerk). Developed fever. Has brown secretions from mouth. Treating for airway infection. Waiting for cultures. Start weaNing from ventilator breathing assistance.
** Julia semi-awake ** Nov 29 - Planned to wake her up today. Delayed. Lots of breathing issues. Required oxygen and rescues. Turned up assistance instead. Confirmed pneumonia. Nov 30 - Still deciding how to wake her up. Reed back home (with me) with 104 fever. Nurse mentioned Julia crying. Freaked out knowing she's not always asleep, and is there alone and scared. Unable to visit with fevers. Awful day. Nurse assured us this reaction is good (shows she CAN still be upset).
DECEMBER ** Breathing tube removal - complications - back on ** Dec 1 - Finally fever-free. Visited. Lungs clearing nicely from pneumonia. On room air (not getting oxygen through vent). Watched her vomit for the first time while unable to turn her head. Awful. Fighting severe constipation from meds. She's aware of us. Even watched cartoons for a few minutes. Posted video of her eyes opening! Dec 2 - Julia's 2nd birthday. Cousins made her laugh (even with breathing tube/halo). Mild fever - suspect pneumonia again. Attempting to squeeze our hands. Weak. Expect to remove breathing tube tomorrow. Dec 3 - Removed breathing tube. Very unhappy girl. 102 fever. More tests. Lots of fluid in lungs. Confirmed pneumonia again. Too weak to cough up fluid. Cannot turn her head when vomits. Choking a concern. Unable to assist with suction tool due to surgery location (back of throat). Confirmed eyes are still funny. Sad. Realizing with everything she's already gone through: major surgery, permanent spinal fusion, halo brace, pneumonia x2... she still hasn't even started fighting cancer. In this condition, we have to pump her full of poison. Dec 4 - Day 1 of PT. Fully sat on edge of bed. Reached for paci and daddy. Wonderful. Lots of coughing. Lots of mucus. Did "finger family" for first time. Dec 5 - Julia back on breathing tube after horrible night of struggling to breathe. Upped her sedation due to breathing tube. Team trying to decide how to break this cycle: being on breathing tube requires sedation. Sedation will make her weaker. She is already too weak to cough up secretions. No plan in sight for being able to suction out secretions (due to surgery location). Unable to begin chemo in weakened state. Mentioned possibility of trach. I freak out. Dec 6 - Lungs clearly nicely on breathing tube. Reed signed consent for trach. PT temporarily stopped due to weakness. Will get gtube directly into stomach (better nutrition / already sedated for trach procedure). Will start "bridge chemo" at end of week. Dec 7 - Fever. Can't get clear image of chest/lungs due to halo vest. Possible infection. Tailored meds. Gabriel visited sister for first time.
** Fevers - gets trach and gtube ** Dec 8 - Fighting fever. Spikes throughout day. No idea why. Cultures/labs all coming back normal. Believes it's due to brain stem cancer. Dec 9 - Moving/gesturing a lot with arms. Grabbing halo rods. Lots of cartoons. Still fighting fever. Dec 10 - Still fever 104. Confident no infection due to labs. Added new pain meds. Chemo starts tonight. Less intense chemo, plan is 3 weeks on, 1 week off. Dec 11 - Mild PT session. Getting more exploratory with hands (pulling off leads). Dec 12 - Trach/gtube surgeries. Went well. Saw possible opening in back of throat - re-sewed shut. Can happen while healing. Will be heavily sedated for 4 days. Dec 13 - Vitals strong. Continues to spike fevers. Swelling from surgery going down. Dec 14 - Fevers. Starting to lower sedation to see twitches. Received several 2nd opinions. Consensus is we are where we need to be, doing what needs to be done.
** Major complication - brain infection and stroke ** Dec 15 - Middle of the night Julia stopped responding to neurological checks. Pupils stopped responding to light. Minimal physical movement. Emergency CT scan. Found massive swelling in brain. Emergency puncture through top of skull to relieve pressure and save her life. External shunt installed. Tested fluid and found it full of bacteria. This infection was the cause of fevers. This swelling caused a stroke. Antibiotic she had been given for pneumonia did not cross blood/brain barrier. Believe infection entered through back of throat that had opened. (Later update): shunt working well. Eyes starting to respond as expected. Do not believe stroke caused permanent damage. Tailored antibiotics to brain infection. Fusion already visible healing. NO CANCER GROWTH! Very unexpected. Called cancer "stable". [Note: they believe it's possible the infection was eating the cancer, as has been documented once or twice in the past, and that is why there was no cancer growth. This lead to false sense of security (didn't change anything though)]. Chemo on hold after just 4 days. Dec 16 - Tired and weak. Brain pressure good. Cracking eyes, but unable to focus - they stare straight ahead. Told this is likely due to active brain infection, and not sign of brain damage. Pupils responding to flashlight again. Standards have been lowered so much, I just want her to look at something with intent. Dec 17 - Back in OR to find source of infection. Sewed throat closed again. Bacteria is streptococcus oralis. Tailored antibiotics more. Entertaining idea of interior (permanent) shunt. Another day of heavy sedation. Dec 18 - Improving from sedation. Mild fever. Bacteria counts lessening. Brain pressure good. CT scan revealed several clots in main ventricles to brain. Detectable left-side weakness due to stroke. Starting to track with eyes again. Dec 19 - Mentioned YEARS of recovery from stroke. Misunderstood gravity of what happened. Clear physical issues. Left arm going hot and cold; unable to move at all. Eyes look bad. Don't follow anything with intent. Clearly awake, but unable to focus on anything. Blood thinners too dangerous with recent surgeries, so they have no current plans to treat brain clots. OR again to re-adjust shunt. First time seeing her cry with trach. No noise. Disturbing. Everyone shocked by cancers non-growth. Dec 20 - Left eye doesn't respond to flashlight check. Connect leads to check for seizures. Another CT scan. Added additional medication for possible nerve pain (due to stroke/cancer). Dec 21 - No evidence of seizures. Removed equipment. Successfully moved both feet and twitched left hand. Right hand very active. Looked at us with intent =)
** PT finally starts ** Dec 22 - Stable. Experiencing withdrawal. Been sedated for over a month. Haven't seen her smile since early November. Dec 23 - No fever in days. Vitals unstable. BP / heart rate all over the place. GI issues. No movement in left arm. 100% breathing on her own (off vent other than CPAP). Dec 24 - Christmas Eve. Very tired. Continue to wean drugs; now on non-narcotic pain meds. No longer sedated (just weak and tired). Very agitated. Uncomfortable. Waiting on word when chemo will restart. Dec 25 - Christmas. Slept all day. Vitals fine. No fever. Limbs randomly go cold. Skin randomly flushes. Left eye stuck cross-eyed. No left arm movement. PT created braces for hands and feet due to limited movement. PT got OK to start work again - focus is stroke damage. Dec 26 - Lots of vomiting. PT session. First in a while. Painful. Cried whole 30 minutes. Excessive mucus production. Dec 27 - Day 2 in a row of PT (finally). 40 minutes. Better. First video of "finger family" since stroke. Wonderful. First confirmation she's still "in there" since stroke. Dec 28 - Gagging / vomiting all night. Day 3 of PT. Moved into chair for first time. No improvement with left arm. Right eye starting to droop. Unsure if this is due to stroke or cancer. Mentioned removing halo on Monday (way early). Requested brother with "brother finger" over and over.
** MRI confirms rapid cancer growth ** Dec 29 - Unusually tired. Did not wake up once. Heart rate spiking very high (180s+). Likely due to "progression of disease". Dec 30 - CT scan and MRI (to confirm halo can come off). CT scan looked as expected. No MRI results. Can hardly stay awake. Dec 31 - MRI results not good. Cancer has grown. Now it's a major concern. Huge growth since brain infection cleared up. Starting to press on brain stem and areas that control things like heart rate, breathing, and blood pressure. Will skip bridge chemo and start aggressive chemo next week. MRI confirmed stroke was way worse than initially thought. Lots of damage. Expect significant motor issues. Will remove exterior shunt and install interior shunt at same time halo is removed. Will require 1 week to heal before chemo begins.
JANUARY ** Apparent recovery to "days to live" ** Jan 1 - Conference call with leading chordoma expert. Only seen 8 kids under 3 EVER. Agreed we're doing everything right. Told us this cancer tends to metastasize. Not good. Julia barely able to open right eye anymore. Jan 2 - More MRIs to determine if halo can come off. PT attempted today. Very weak. Jan 3 - Halo removed! It's been on for ever 6 weeks. Will be in temporary neck brace for a week or two. Expect her head to be stuck forward with very little mobility (permanent). Sedated from procedure. Jan 4 - Skin under halo vest looks like reptile skin. External shunt will be removed in a few days once internal shunt proves to be working. Surgery locations healing well. Right eye hasn't opened at all. Pupil responding very minimally to flashlight. Cancer progressing. Real PT to start on Monday, along with actual chemo (finally!). Julia turned head way further than expect (to look at Reed of course). SMILED at daddy. HELD by daddy! Wonderful day! Jan 5 - Julia's body is thin. Swapped crib for bed so we can cuddle (neurosurgeon does not want us picking her up again for a while, due to fragile neck). Very tired. Lethargic. Almost unresponsive. Neurology says this could be normal due to all the neurological complications, or could be due to cancer. Jan 6 - Worst day of my life. Worse than all worse days combined. Couldn't even write the date without crying. Julia had stopped using her (previously-active) right arm. Unusual. Emergency MRI. MRI showed tumor rapidly grew and is now completely compressing brain stem and taking up nearly 100% of available space - almost nothing left. Entire team had several-hours long meeting, desperate for any options. There are none. Any swelling will kill her. Chemo causes swelling. Radiation causes swelling. Surgery causes swelling. Gave her days to live - 1 week at most. Lots of tears from all doctors. Julia officially switched to comfort care (hospice). Stopped using hand/feet braces for comfort reasons (what's the point). Upped all pain relief. No signs of discomfort. Jan 7 - Waiting for her to die. Physical pain is awful. Do handprint / footprints with Child Life. Awful. Took ceramic mold of her hand. Cried the whole time. [Typing this through tears.] Talked about final wishes. Asked lots of questions about how it would happen. Asked if we could hold her. Reed wants to be the one to hold her. Watched vitals jump all over. Dangerously low. Dangerously high. Could pass at any minute. Unable to talk. Unable to move. Can barely see out of left eye.
** Julia on hospice, waiting to die ** Jan 8 - Almost zero responsiveness. Upped meds again for comfort. She's always being touched by Reed or myself. No further tests will be performed (what's the point). Reed and I start alternative treatments as we're unwilling to do nothing. Have no expectations. Took "final photos". Awful. Jan 9 - Considered no longer updating. Morbid. Death watch. Upped Julia to Morphine drip. Disconnected vent "for comfort". Looks like she's sleeping. Doesn't look like cancer child. Can only open left eye a sliver for a minute or two. Signed brain tissue donation paperwork listing Julia as "name of deceased". Feels like we officially gave her up for dead. Awful. Jan 10 - Slept all day except just one second of left eye peek. Confirmed with doctors that Julia wasn't likely to pass "imminently". Went home to get clothes. Found 15 year old cat struggling to breathe. Knew it was bad. Said goodbye to her. Drove her to emergency vet just in case. Confirmed she has mass on her heart. Likely cancer. Called Reed on speaker to talk to her as she was put down. Jan 11 - Woke up a few times. Opened left eye for a few seconds. Managed to find her cartoons once! Stats all over the place. Blood pressure steadily climbing. ET steadily climbing. Terrifying to watch. Totally unable to respond. No idea if she's in pain. Doctors expect her to be aware of very little due to tumor location (affects alertness / awareness). Blessing in disguise - at least she isn't suffering. Jan 12 - One week past "days to live". Julia's following exploded. Read comments out loud to her as she's unconscious. Believe she's conformation. Breathing labored. Lots of hard talks with doctors about how it will happen. They expect her heart or breathing to stop. They promise they won't let her feel pain. Bracing ourselves to watch her take last breath. Signed DNR (do not resuscitate). Jan 13 - Left eye cracked open. Tracked us for a second. Chest movements labored. Doctors starting to ask odd questions (such as if we've seen movement in hands) - Are they confused as to why she isn't dead? Unsure. Jan 14 - Slept all day. Almost no alertness. Comfortable. Vitals trending poorly. Not medically sedated at all. Praying for some eye movement tomorrow.
** Julia continues to decline - talks of starting chemo ** Jan 15 - Opened left eye a few times. Twitched her left toes. Expressed our confusion to team - why is she still here 9 days later? Has this opened up ANY options? Do we risk swelling? Explained alternative therapies. Requested another MRI. Jan 16 - Vitals bad. Spoke with asshole doctor (essentially said: What's the point of another MRI? There's only one way this cancer ends. Regardless of what MRI shows, it wouldn't change her care. Focused on comfort only. Chrodoma can't be cured. Brain stem damage is so severe she'd have no quality of life at all - it has likely already destroyed her vision, speech, and movement centers. She'd be an invalid. All chemo would do is introduce toxins into her body with no chance of reversal.) Learned cancer has metastasized down her spine and there is a secondary tumor. Insisted on MRI tomorrow. Insisted we be given treatment options. It's our decision to treat. Laid Mulan dress over Julia for picture. "She's not a princess, she's a warrior" was born. Jan 17 - My birthday. Starting to swell. Angel family from New Zealand contacted me about her son with Julia's cancer. Successfully treated with chemo - only 10 months old with mets throughout body. He's now 4 and normal. Provided MRIs and exact protocol. Immediately called my (non-asshole) oncologist. Insisted treatment start ASAP. Jan 18 - MRI. BP having a hard time being controlled by meds. Jan 19 - MRI results. Still growing, but growth rate slowed down a shocking amount. Visually estimated only 5% cancer growth over 2 weeks, as opposed to quadrupling in 6 days. Chemo back on the table. Vitals still poor. Starting to go through long periods of minimal breaths (like 5 a minute). ET very high - 90s/100. Jan 20 - Barely opened left eye twice. No focus at all. Left pupil starting to not respond to neurological checks as well (right eye hasn't responded in weeks). She's fading away. Reed has infuriating talk with asshole doctor about starting chemo. Doctor just didn't care. I called our oncologist and treatment will begin Monday. Hard chemo. Lots of potential complications. Jan 21 - HR climbing very high. ET climbing. No alertness at all.
** First round of chemo - totally unresponsive ** Jan 22 - First day of chemo. Mild fever. Added Ativan for comfort. No alertness. Jan 23 - BP improving - new medication might be helping. Extremely swollen. Urine issues. No alertness. No eyes open. Jan 24 - Vitals poor. No infections yet. Hasn't opened her eye in days. Secretions constantly. Back on ventilator assistance. Started feet/hand braces again in hopes she'll one day walk again (rather than comfort care). Jan 25 - Vitals improving. No alertness. Tongue starting to swell. Jan 26 - 3 weeks past "days to live". vitals poor. Left pupil now completely unresponsive to light - sign that cancer continues to progress. Jan 27 - Day 5 (of 5) of chemo. Vitals bad. No movement. Left pupil "slightly better". Desperately want eye to open again. Any sign that she's getting better. Jan 28 - Blood transfusion required. Sleeping... or unconscious due to cancer - we're not sure. Left eye mildly responsive to light.
** Recover from chemo - first sign of alertness if over a week ** Jan 29 - Vitals better - improved from 1 week ago. Nibbled fingers/suction tube 3 times! First sign of ANY alertness in a week! Started to step down pain meds. Jan 30 - More mouth movement. Left pupil COMPLETELY NORMAL reaction to light. Blood counts are down from chemo. Jan 31 - 3 months in hospital. More mouth movement. Left pupil responding to light. Left eyelid twitching (no opening though). Counts at 0.
FEBRUARY ** MRI results - amazing! Still very unresponsive ** Feb 1 - Counts at 0. Breathing affected. No improvement in alertness. Not being medically sedated at all - this is all cancer on brain stem. Feb 2 - Major breathing difficulties; really upped support. Sad day. Discouraged. Required full vent assistance - first time since surgery that she can't breathe on her own. Kept playing with her foot hoping I could make it twitch. Nothing. Just feeling her pulse. Want to see her eye open so bad. First time laying on side in 3 months. Nice to see. Feb 3 - Vitals good. Lowering vent assistance. Slight fever. Counts rising dramatically. Bit Reed's finger! Feb 4 - Numbers recovering. Highlight of day is another chomp to Reed's finger. Hair starting to fall out. Feb 5 - Counts fully recovered. MRI tomorrow. Terrified. Feb 6 - Uncle passed to liver cancer =( Julia vitals are improving. No MRI results. Back to breathing room air and "over" vent. Mild fever. Hair rapidly falling out. Oncologist shocked to see several movements - face grimace, shoulder movement, and pulled away from flashlight(!!!) Still no eyes open, but wow! Feb 7 - MRI results. 1 month after "days to live". 1 month after start of alternative treatment. 2 weeks after first round of chemo. Blood clots completely gone. Stroke damage healing. Spine healing (can remove collar). NO CANCER GROWTH. MEASURABLE CANCER REDUCTION. OMG.
** Lost hair from chemo, opened eye for first time! ** Feb 8 - Vitals good. Mostly bald. Reed thinks he saw her turn her head a little. Unsure. Definitely moving jaw and tongue. Praying for something more - a peek or a finger twitch. Feb 9 - Several people have seen her twitch her shoulders, neck and head! And BEST NEWS - Reed saw her left eye not fully closed at one point. He opened eyelid with his thumb and saw pupil darting around. This is the first time the pupil moved (rather than just reacted) in WEEKS. Closed eyelid; unsure. Opened it again and she LOOKED RIGHT AT REED!!! Feb 10 - Gaining alertness. Growing agitated. Upped anxiety meds. Barely opened left eye. Feb 11 - First normal blood pressure since being admitted. Other vitals not great, but not bad. Opened left eye a sliver SEVERAL times! Focused on cartoons once! Head shaved by nurse. Finally looks like she has cancer. Feb 12 - Eye opened twice as big TWO TIMES! Round 2 of chemo starts. Feb 13 - My grandma passed this morning. Old age (was 103). Julia hasn't opened eye today. Sad from lack of progress. Worried. Feb 14 - No eye open. Fingers on right hand TWITCHED! Hasn't moved hand AT ALL in WEEKS! Tried to squeeze my hand while being suctioned - barely noticeable.
** Regains more abilities ** Feb 15 - Heart rate elevated. Agitated during care (diapers / trach). Good sign. Everyone happy with how she's tolerating chemo. Opened left eye a crack. No body movements. Feb 16 - Round 2 of chemo complete. Reed held hand all day hoping for a twitch - nothing. Feb 17 - Vitals poor. Lots of vomiting. Numbers bottoming out. Opened eye MANY times! Once for 30 minutes! Found cartoons immediately =) Tried to move head on several occasions: very shaky / no control. Reed felt her right hand move for first time in well over a month. Feb 18 - Depressed thinking about her condition. 2 years old. Went from playing one day, to waking up unable to see, unable to move, unable to talk, unable to be held... in pain, doesn't understand... Sad. Asked if she could say "mama" and she mouthed mama! No sound. Then she started to cry. Felt awful for asking. Twitched her LEFT hand!! Feb 19 - Slept all day. Counts at 0. Opened left eye half way! Definitely looked at Reed. Moved left hand more. Feb 20 - Vitals good. Crazy physical improvement over past week. Unreal. Team is (pleasantly) shocked. Still lots of concern over possible damage to brain due to cancer location and stroke. Brain stem cancer is developmentally devastating. Time will tell. Feb 21 - Tired. Lowered vent settings more (good direction). Alert! Moved her FOOT! (Barely!) First time since December. Appears to be trying to life her right arm. Nowhere near strong enough. Responded with "yes" motion to many questions. Told "No one knows exactly what's happening, but regaining abilities is not a sign of a progressing disease." OMG. So happy.
** Regaining more abilities - shocking team ** Feb 22 - Very clearly watching cartoons out of one eye. Did first sprint with vent for 4 hours - did great! First day of PT since before bad news. Exhausted. Yawned for first time! Feb 23 - Weaning Morphine and Ativan. Sprints going well. Opened eye halfway again. Tracking us as we walk around room. Playing with "finger family". Wiggling fingers like crazy. Trying to lift arm. Wiggling head. Feb 24 - Moving fingers a lot even in sleep. Moving right foot up to thigh! No real movement on left side. Laughed! Then immediately cried. Were told this is common when recovering from stroke. Responding appropriately when asked to do basic sign language that she knows. Wow. Feb 25 - Levels rising nicely from chemo. Turned head 2 inches toward us - more movement than we expected her to have. Several whole-torso shimmies. Weird to see. Told common when recovering from stroke. Laughed several times! Smallest smile! Team THRILLED with progress! Feb 26 - Heart rate dropping at night several times. Freaking people out. All kinds of tests. Reed held her for first time in long time. Discomfort getting into position, but nothing like it was in December. Heaven for daddy and Julia <3 Heart rate lowest it's been in months while in daddy's arms. Sang songs. She mouthed "more?" after each one. First slightest twitches in left foot! Feb 27 - Lots of vomiting. Can't turn her head. Just barfs into mouth and waits for nurses to run in once alarms go off. Horrible to watch. Believe to be withdrawal. Feb 28 - 4 months in hospital. Counts rising. Whole body starting to jerk. Starting to mouth words she knows. Remembered animal sounds and numbers. (Extra amazing since she's been sedated/unconscious for MONTHS and only learned this stuff shortly before being admitted). FaceTimed with Aunt Charlene and Gabriel. Loved it. Got video of entire left hand moving!
MARCH ** Improvement ** Mar 1 - Vitals good. Met with OT (occupational therapy) - lifted all therapy restrictions. Doctors impressed by movements. Skeptical when we said she could talk (silently). Showed them =) Performed "painful response test" (ice) - last week there was no response, this week she responded on right side of her body. No response when ice was on left side. REMOVED DNR!!! Mar 2 - Slept all day. Mar 3 - Lots of vomiting. Adjusted meds. Able to turn her head right; won't turn it left. (Amazing she can turn it AT ALL). Moved all 4 limbs on demand several times. Clearly gaining strength. Can move entire right hand up to and including wrist now. Toes visible wiggle. Smallest peek out of RIGHT EYE!!! (Hasn't opened right eye in 3 months). Pupil still stuck forward and not responding to light. Mar 4 - Vitals good. Lots of barf. Trying to open right eye more. Detect minimal movement in eyeball. Trying real hard. Mar 5 - MRI today. Partial results are GOOD! NO GROWTH! Right eye is definitely open! 1/3 of the way. Got goosebumps for first time again during a bath (another regained ability as cancer pressure lessens). Super happy to get covered up after bath - nodded, smiled and giggled! Mar 6 - Officially NO BAD NEWS from MRI. All positive. Want to start trach classes immediately. Discussing moving us out of PICU. First time we're told she'll be coming home ALIVE! Mar 7 - PT schedule to do another re-evaluation in interest of sending her home sometime. OT said left side has healed nicely from stroke, can resume active PT. Opened both eyes real big - left all the way / right half way. Starting to pet stuffed animals. Starting to grip things. Nodding yes to things!
** More improvement. Lots of puking. Round 3 of chemo ** Mar 8 - GI issues. PT asked us to bring in stroller =) Mar 9 - Lots of vomiting. All day. Limited options with chemo. Very alert. PT/OT/Speech officially on schedule. Grip strength improving. Mar 10 - Vomiting continues. Able to push down with right arm. Can wave if arm is held up. Played first game on iPad with assistance =) Mar 11 - Vomiting with blood. Tests and labs. All fine. Assume to be chemo - round 3 starts today. Started new formula. Mar 12 - Stopped new formula due to barfing. Wiggling a LOT. SMILED! Played along with "No More Monkey's Jumping on the Bed" Mar 13 - CT scan to check everything. Snot factory. Opinionated. Trying to find private room in PCU. Mar 14 - Lots of sleeping. More tests for vomiting. All fine. Ophthalmology did exam - unsure if she can see out of right eye, but think she can.
** Even better! ** Mar 15 - Slept all day. Round 3 of chemo complete. Long talks about coming home. Overwhelming. Mar 16 - Moved to PCU! New doctor commented she looks really good (was concerned after reading her file with all she's been through, expected to see a child in much worse condition). She did hand movements to Baby Shark. Doctor is thrilled. Mar 17 - Talk with first home nursing company. Julia made front page of local Sunday paper. Mar 18 - Mild fever. More weaning of pain meds. Really trying to lift right hand. Can get it up partially but then it flops. Getting frustrated. Mar 19 - Counts at 0. First real session with OT. Understands things are still there when she can't see them (great for neurological reasons). Mar 20 - More blood in vomit. More tests. Pumped stomach. Insisted on formula change despite issues. First real PT session - moved all around. Several weak high-5s all on her own! Lifted right arm to belly. Mar 21 - Blood transfusion. Counts good. Can lift right arm at elbow.
** Thrilling her team with abilities ** Mar 22 - Change schedule around. Evening baths to help relax. Reacted to favorite books for first time. Really protesting trach care. Mar 23 - Exhausted. Sat in stroller for FIRST TIME since before surgery in November. Right pupil starting to move a little. Mar 24 - "Controlled emergency" - unable to breathe after trach change. In distress. Alarms going off. Think new trach got clogged. Right eye acting weird, seeming to move independently from left. Another CT scan. All find. Mar 25 - Interacting with Child Life. Very happy. Turning pages on her own with right arm. Ophthalmology thinks right eye moving weird might be nerves regaining ability. Not concerned. Oncology "pleased with remarkable improvement". Mar 26 - Agitated. Starting to do cute child-like gestures (like "shhhh') and blowing kisses. Really trying to touch face with right hand. Flops. Starting to point at things she wants. Can make funny faces when asked. Waves goodbye to all nurses. Mar 27 - Hated PT. Saying no to everything. Requests books for HOURS. Still trying to touch face. Mar 28 - Lots of vomiting. Rough day. Finally off narcotics for first time in 3 months. Blood counts are great. Intro consult with PCU. Concerned over words used, such as "quality of life". Want confirmation the team isn't training us to take her home to die.
** Discovered Peppa ** Mar 29 - spoke with oncologist. Confirmed they believe Julia is beating the odds. Agreed to do trach training. Switched to better nutrition (finally). Discovered Peppa Pig. Julia only wants Peppa. Watches for hours. Mar 30 - Projectile vomiting. Able to rub eye for first time. Adorable to watch! Mar 31 - 5 months in hospital. Lots of barf. Not getting enough calories. Losing weight. Several solid leg kicks. Rubbed eye several times =)
APRIL ** Huge physical improvements - round 4 of chemo ** Apr 1 - Lots of puking. Round 4 of chemo. Visited with baby brother for first time since January. Most precious visit ever. Lots of waving. Lots of high-5s. Apr 2 - Slept all day from chemo. Stopped feeds to prep for procedure to adjust feeding tube (to assist with vomiting). Played peekaboo for first time. Apr 3 - Procedure to push feeding tube further into intestines. Went well. Increasing feeds with no vomiting. Sat in stroller for 2nd time. Supported head on her own, and turned partially from side to side. Awesome. Loved an interactive egg game OT brought in. Commented that she's regaining fine motor control (rather than whole-fist grip she was doing week before). Apr 4 - Blood pressure issues. Dropping low. Not sure why. Tests. Fluids and steroids recovered it. Apr 5 - Round 4 of chemo complete. Exhausted. Danced (wiggled) with nurse. Apr 6 - 3 MONTHS since "days to live". No vomiting. Kicky, squirmy, wiggle bug. Trying to roll over (unsuccessful). Starting to do "I don't know" hand gesture again. Adorable. Can say (mouth) Peppa! Apr 7 - Several days of no barfs. Grumpy and wiggly. Can finally reach her bald head. Feeling and patting it. Watched videos of herself over and over and giggled.
** Vomiting under control ** Apr 8 - Aggravated. Lots of mucus. Starting to make noises around trach. Swats at suction tools. Apr 9 - Count at 0. Wiggling and singing (mouthing) to toddler songs. Learned word "tiger". Apr 10 - Wiggling to Peppa theme song. Completely sat up in bed (supported) with PT. Last time was in December. Got full body hug <3 Apr 11 - Vomiting really improved. All therapists now involved in Julia's rehab. Deflated trach cuff for 30 minutes - did well. Starting to pretend to sleep when nurses come in. Officially told "there is no neurological damage or deficiency". Unreal. Apr 12 - Putting on weight finally! Sat up during another PT session. Already better than last time. Kept tugging on Reed to give her hugs. Sang with cousins on FaceTime for 45 minutes. Apr 13 - Lots of crying. Tired. Only wants Peppa. Cuddled with us all day. Played matching game on phone for first time since November. Shaky hands, but did perfectly. Apr 14 - Lethargic. Poor color. Found BP to be dropping again. More tests. More labs. Don't know why. Fluids and steroids brought everything up. Nerve-wracking day. Cuff deflated all day - did great. Starting to make noises.
** Rapid improvement ** Apr 15 - Grumpy. All day bed cuddles. In heaven. Kept trying to scooch / roll toward Reed while in bed. More noises around trach. Apr 16 - MRI tomorrow. Patted bed asking Reed to lay with her <3 <3 First time doing this gesture since before surgery. SCOOCHED herself right up next to Reed while he was sleeping beside her. Apr 17 - MRI today. No results. Very happy baby. Can smile on request. Lots of requests for hugs and cuddles. Expert scoocher. Changing channels on iPad on her own. Loves it. Putting tiger on her face to nap. Apr 18 - MRI results. All good news. No growth. Visible reduction. Whole team will review for next steps. Everyone thrilled. Commented on rapid recovery. Apr 19 - Scooched completely over to Reed (and right off her pillow) while cuddling next to him. Trying to use legs to turn toward him (not quite there). Lifts entire right arm to control iPad. Apr 20 - Easter. While propped semi on-side, able to roll over enough to lift shoulders off bed. First time since before surgery. Wipes her nose on demand. Tested a breathing sprint (no vent support other than CPAP). Apr 21 - 2nd day in row of breathing sprint - did great. Successfully pointed to ABCs on a board. Loved it. Scribbled on board for first time.
** Round 5 of chemo ** Apr 22 - Round 5 of chemo. Very vocal. Said "No!" for first time around trach. Continues to pretend to sleep. Hilarious. PT got her sitting up again for a while, assisted, hated it. Reaching out with right arm. Left arm definitely lagging behind. Managed to wiggle herself completely sideways in bed. Apr 23 - Exhausted, grumpy, swollen, lots of mucus. Constantly gagging on mucus. Too tired for therapies. Breathing sprints perfect. Apr 24 - Lethargic. Giggled through Speech therapy. Will review MRIs tomorrow. Apr 25 - Slept all day from chemo. MRI review fantastic. Comparison shots show remarkable improvement. Feeling optimistic for first time in a long time.
. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3