suebear6
01-31-2009, 01:03 PM
Dear All:
Figured it was time to check back in. I have been avoiding this site since last July when I had the CT myelogram that gave me the 2nd PDPH and the 3rd EBP (which wasn't a complete cure). My CSF pressure was elevated when they did the CT myelogram and they imaged a subdural collection of fluid at L4-5 and L5-S1. One neurologist at Cleveland Clinic said it was clearly CSF, the other said no way. All that occurred over the 4th of July weekend so after spending 6 days of hell on the floor in excruciating pain they finally did EBP #3. It sucked the air right out of my head and sinuses. I was standing waiting for the valet to get the car after the EBP and out of nowhere coughed, got a very sharp pain in my spine, my knees buckled and it was over. Then over the next few days I had raging river noises in my ears, I stayed flat like everyone advised….thought all was healing gradually, I could sit up etc. But then at the 2 week mark my head started tingling again. The primary sent me to a neurosurgeon who told me I had an internal leak so therefore no surgical options. Still not clear on what an internal leak was. All I remember was that I was still laying flat because it was too draining to sit up.
Went to followup with the primary to get referred somewhere for help and the guy very pleasantly told me that he believed that something was wrong, but he and his NS were at a loss as to what to do for me and that I was the 3rd patient in his career that he couldn’t help. I was on HMO so all referrals come from the PCP. I asked for a neuro or headache center. He discharged me as a patient.
So my insurance co. case mgr. got me a new PCP Aug 1st. He stopped the oral fungal meds (I had a foot surgery 5 months prior in March, got an infection within 24 hours of that surgery both to the foot surgical incision and to my left thumb where they had put the pulsemeter during surgery). They had been treating me with oral antibiotics and fungals for 5 months since the surgery in March and then I had the CT myelogram/PDPH#2 in July. So I got a huge abcess under the thumb nail. New PCP sends me to the ER (at the hospital where I had surgery/contracted the infections). The ER doc says I don’t see anything, go back to the PCP.
They send me to a hand surgeon who literally ripped the nail right out of the nailbed and then sent it for cultures. The packing material got stuck so I was back a few days later to get that ripped off. He then squeezed the raw, no nail thumb with all his might (probably to stop the bleeding I guess) and when I stood up and screamed “I need pain meds” he said “you’re very sensitive to pain”. :eek: Normally I would have responded, but with the state of my head pain after I screamed and stood upright really fast I wasn’t doing anything but sitting back down and breathing deep. My head and face were constantly tingling so bad last summer/fall I couldn’t do ANYTHING!!!!!
So the cultures came back with heavy growth of 4 different staph infections :eek:(klebsiella pneumonia, serratia marcescens, pseudomonas auriginosa, enterococcus faecalis) and a fungal infection and the MRI shows osteomyelitis (an infection in the bone). They surgically installed an IV PICC line and begin 10 weeks of oral and IV meds. Had home health care come each day and run the IV. Very freaky!!!! They had to pull and install the IV surgically 3 times because it was causing nerve pain (I have a 15 year old RSD nerve damage injury to my right arm). Stress is a known activator of the RSD nerve pains and trust me walking around with an IV dangling from your arm for months, knowing that it is a direct line into your heart and bloodstream and another source and route of entry for infection is stressful. I got red man syndrome from the Vancomycin, they tried to pre-med with Benadryl (which makes you fall asleep). I have 4 LITTLE kids. Very dangerous!! I needed help but the ins. co considers that custodial care and will pay to drug you up and put you to sleep (no thanks) but will not pay to watch your 4 kids while you can't function. :confused:
They switched me to IV Cubicen. I finally made it through the treatment and then AFTER they stopped all the infection drugs I got 17 days of constant muscle spasms where every single muscle in my body was cramping (even my eyebrows and miniature muscles in my groin, muscles you don’t realize you have until they spasm and freak out). But the spasms only happened when I sat up (another weird positional phenomenon). The new PCP told me I had restless leg syndrome (really? 'cuz it doesn't happen at night while I sleep) and GERD. I came home and looked that up on the internet and I don't have one single symptom of GERD. I did, however, tell him that I wasn't taking anymore Lyrica 'cuz I had tried it 3 times now and it gave me the other kind of dizziness/lightheadedness and a bunch of other bad side effects and I wasn't willing to ruin my stomach for a drug that didn't do anything to help my head/nerve pain. The infectious disease prescribed a muscle relaxant but said it would put me to sleep (not OK with 4 little kids). ID pulled the blood and claim the lab lost it so I'll never know if it was the potassium or megnesium or what went out of whack to cause those 17 days of pure hell. The intense cramping did go away and the tingling head did eventually get milder. But now I still get “itchy head, itchy ears, itchy face” daily when I sit up for long periods.
My 4 year old daughter, Mackenzie, was with me through the whole IV drugs ordeal, snuggled up with me on the sofa while the nurses ran the meds. She has a smile that just melts all your problems away. She was so cute always hugging and kissing me through the nurses daily visits.
But last August she started having back pain that was waking her up in the night. My back was incredibly painful from Aug-December, so I tried to avoid this website or say anything out loud about how I was feeling because I kept taking Mackenzie to the doctor explaining that she was fine during the day (except for some random charley horse type muscle spasms), but she would grind her teeth (it sounded like she was chewing glass), thrash around in her sleep and then wake up screaming “my back, my back”. I kept taking her to the pediatrician, the xray was negative, the ER docs laughed us out of there telling us there was nothing wrong. The orthopedist told us she just needs attention, nothings wrong, kids do that sometimes. The dentist told us kids grind their teeth, don’t worry. They almost convinced me that I was crazy and that she was picking it all up from me. It was really hard because she is so smiley and cute and the doctors are only opened during the day (and her weird "muscle spasm like pain" only occured at night when she fell asleep or during her nap).
On Thanksgiving night I sent my husband to the ER (‘cuz they weren’t listening to me). They did an MRI and told him “negative, everything is fine”. My husband is latin and he said he had to fight with the ER doc to get him to take it seriously. We 1st called the pediatrician, but while waiting for the callback I told my husband "just go to the ER, 4 year olds don't have back pain every night while they sleep". The pediatrician later told us she had called the ER doc and told him she had heard Mackenzie screaming in pain on the message, and told the ER doc to put her in the MRI scanner. What we didn’t realize until just a few weeks ago was that they only imaged the lumbar and the nurse’s and triage notes say she was there for THORACIC back pain. I am so sick of the medical errors and misdiagnosises.
In the meantime the other 3 kids spent all of Nov and Dec with sinus and ear infections, sniffling and coughing their way through the allergy season, multiple antibiotics etc. I got her to PT in Nov, they said her scapula was winging . Back to the pediatrician who said she could feel something and was ordering imaging. Finally!!! But then had to contend with the holidays (no available MDs) and fight the cheapo insurance co who claimed they didn’t have funding.
Meanwhile the baby who’s had 11 ear infections in the past year, we had finally won the battle to get his insurance co to pay for tubes in the ears and to remove his adenoids to try to stop the chronic infections was finally scheduled for surgery Dec 4th. So my husband took him to surgery (he is a new man, he can now hear, he laughs, he immediately started talking, no infections since). :):) That same morning, I took Kenzie for her MRI of the C-T-L spine and they imaged a mass in the paraspinal muscle :eek:
We had been massaging what felt like a knot between her scapula and spine for weeks.
On Dec 15th we went to Miami Childrens Hospital for the biopsy. They did a CT that morning of the paraspinal muscle mass and also saw suspicious lung nodules. The biopsy was malignant so from the PICU her care was transferred to oncology. We stayed 3 days to get her workups and then they sent us home for Christmas. The tumor was imaged and extended from T1-T8. They said they would treat her as Stage IV unless proven otherwise (but without a lung biopsy they couldn’t be sure about the lung lesions) so have to do chemo for the paraspinal muscle tumor and if the lung doesn’t respond then they’ll do a biopsy.
She also has a very rare (less than 100,00 people worldwide) dermatologic skin condition, a form of mastocytosis called urticaria pigmentosa (UP) where she’s covered with spots (people always think she has chickenpox) that raise into red hives, sometimes fill with fluid when she gets a virus or allergic reaction and itch intensely. Well that condition, urticaria pigmentosa, prevents her from having most any pain medication, radioactive dye, or anesthesia (because those things are all mast cell degranulators and then have the potential of causing a mast cell release that can cause anaphalactic shock, total cardiac collapse, death etc).
So we left Miami with no definite diagnosis (except some type of cancer or cancerous tumor) just before Christmas, waiting for the pathology report to arrive. We thought we were going for a quick biopsy and left my mother home with 3 sick kids. It was pure torture to be separated with all 4 kids sick and 3 without Mommy & Daddy.
My head symptoms/ear symptoms/vertigo continue on (although I do looking back, especially after the July PDPH, see slow improvement). I’m still plagued by exhaustion, mental fog, memory problems, have a hard time sitting upright for long periods. I went and did a SINE study at University of Miami with Dr. Martinez-Arizala in October. That study showed decreased disc space at L1-L2, endplate irregularity and Schmorls nodes at L2 (the July CT mylogram/PDPH was done at L1). Buldging disc at L-4 and L-5 eccentric to the left. Disc protrusion at L5-S1 with posterior annual tear. Left paraspinal muscle is atrophied. And now there is a cystic structure adjacent to the S2 nerve root measuring 9x11 mm. Likely a tarlov cyst. (Hhhmmm now the subdural collection of fluid is gone but there’s a spinal nerve root lesion filled with spinal fluid after all of these PDPHs and EBPs). Kinda weird too my daughter's tumor is in her paraspinal muscle.
My new since Aug PCP that my ins co got for me recently screamed at me “I have all your reports and there is ABSOLUTELY NOTHING WRONG WITH YOU”. I asked for a referral to a neurologist (since I’m guessing the itchy head, ears, face must be related to some sort of nerve damage). He told me to use Head and Shoulders, I had dry skin on my head. Told him my sinus areas (forehead and cheeks) and ears were itchy (or mildly tingling) as well as the back of my head, scalp STILL. Should I put men's shampoo there too? I told him I was concerned because I now have a lump in the back of my neck & hair and that is how I first got to him (with a painful swollen lump the size of a bean that appeared in my armpit just before the infection abcessed to my hand and I started the IV antibiotics for the massive infections). So sorry to seek medical advice from a Dr. when I sense a change in my body. So if I am so crazy why don’t you refer me to a psychologist???
Between my misdiagnosises and Mackenzie’s I am so disappointed in the medical community right now. Maybe if the insurance co’s weren’t so cheap her cancer wouldn’t have metastasized. So now we are caught up in fighting for her masks and Tylenol (the only safe pain med she can take due to her other condition), medical supplies and nausea and diarrhea medicines they don’t want to pay for (things that are necessary due to the side effects caused by the toxic poisons they are using to try to save her).
We are fighting to get her to a childrens hospital where there are playrooms and toys and anything to make this more pleasant. Miami Childrens Hospital is 75 miles from home and this next set of chemo is all inpatient where they have to do 2,3 and 5 day admissions to flush the kidneys. I stupidly asked to go to a hospital close to home so that my 4 kids could remain together and we could leave 1 parent with her in the hospital and keep Anthony in Kindergarten and Alicia in 1st grade and just go to the hospital to be with her. What a mistake!!!! The hospital doesn't have the $$$, the volunteers, as many people to entertain her.
She got a fever in the middle of the night, went in through the ER with my husband, got misdiagnosed with appendicitis (no stomach pain, on the same day they had injected dye for a PET scan, and her other condition, urticaria pigmentosa (UP) is one with mast cells and inflammation in the GI tract). Hhhmmm there have been A LOT of kids on her floor who are recovering from appendicitis. I bet that’s an emergency surgery that the ins co pays for. Then some stupid nurse used Kenzie to teach another nurse how to access a port (permanent IV surgically implanted in her chest) WITHOUT GLOVES, they stabbed her 4 times. Now Kenzie is petrified of having the port accessed and screams and kicks and freaks out. To top it off, they switched her nurse in the middle of the night from an oncology nurse to a pediatric nurse and gave her a suppository (suppositories and rectal temps are not allowed when on chemo because of the risk of tear and the risk of infection in a child whose immune system has plummeted due to the toxic chemo drugs.
On the last admission we got a great nurse who was formerly a nurse at Joe Dimaggio childrens hospital. She educated us on gloves, medical waste containers, how to handle the pee & poop for 48 hours following discharge, toxic diaper disposal of the overnight diapers etc. But they don’t do that at the hospital she’s currently at and the insurance won’t pay for the disposal container, masks, gloves etc. Apparently the chemo can change your DNA. Great, so now that we were not using safe disposal methods, will my other 3 kids be able to conceive, carry a pregnancy or wind up with a healthy baby in their lifetimes? We used our toilet at home like we normally do, and I wiped up the vomit with the closest washcloth. I now know why this hospital doesn’t have a quality of care rating. Wish I had known such a thing when we started. We’re going back to Miami for the imaging and 2nd surgical look next week and then hopefully to Joe Dimaggio (a little closer in Broward) to continue on with the next set of chemos which they say are much worse.
We had to wait 2 weeks for the pathology report, and when they put in dye and reimaged the tumor it now shows from C5-T8 and there are multiple lung lesions. She started chemo New Years Eve and we are now about to start week 6 (re-imaging and another surgical look) of a 54 week protocol. My husband went out on unpaid FMLA December 4th (to help the baby recover from the ear/adenoid surgery for 2 weeks) and has never returned to work.
It is not possible for me with my health problems, 4 kids, 2 in school, 1 in the hospital to do this alone. My SSDI claim has been denied and I have to appeal and go in front of a judge. We just submitted Mackenzie's SSDI. They say it's faster and easier for kids with cancer.
In one of those strange twists of fate, has to be Karma, everything happens for a reason, in that moment you question if there really is a God, I was immediately sure there has to be because I just finished with my PICC line/massive infection experience. Just before Mackenzie’s cancer and her port placement. Now I know that it is possible to recover from a massive infection. I’m sure I will need that reminder somewhere along this cancer journey. A similar thing happened after the hurricanes (and the mold) where the kids got sick and then I, too, developed allergies. It was as if I had to suffer the same thing in order to understand it so that I could explain it to the doctors and fight to get my kids medical treatment. Anyways.
Thanks for listening. Best wishes to all of you in your journeys. I haven’t had time to catch up on your progresses in the past 6 months but we are now heading back to the hospitals with internet access with Mackenzie so I’m sure I’ll have lots of time to catch up very soon. Stay strong and never stop believing in a cure.
Sue
Figured it was time to check back in. I have been avoiding this site since last July when I had the CT myelogram that gave me the 2nd PDPH and the 3rd EBP (which wasn't a complete cure). My CSF pressure was elevated when they did the CT myelogram and they imaged a subdural collection of fluid at L4-5 and L5-S1. One neurologist at Cleveland Clinic said it was clearly CSF, the other said no way. All that occurred over the 4th of July weekend so after spending 6 days of hell on the floor in excruciating pain they finally did EBP #3. It sucked the air right out of my head and sinuses. I was standing waiting for the valet to get the car after the EBP and out of nowhere coughed, got a very sharp pain in my spine, my knees buckled and it was over. Then over the next few days I had raging river noises in my ears, I stayed flat like everyone advised….thought all was healing gradually, I could sit up etc. But then at the 2 week mark my head started tingling again. The primary sent me to a neurosurgeon who told me I had an internal leak so therefore no surgical options. Still not clear on what an internal leak was. All I remember was that I was still laying flat because it was too draining to sit up.
Went to followup with the primary to get referred somewhere for help and the guy very pleasantly told me that he believed that something was wrong, but he and his NS were at a loss as to what to do for me and that I was the 3rd patient in his career that he couldn’t help. I was on HMO so all referrals come from the PCP. I asked for a neuro or headache center. He discharged me as a patient.
So my insurance co. case mgr. got me a new PCP Aug 1st. He stopped the oral fungal meds (I had a foot surgery 5 months prior in March, got an infection within 24 hours of that surgery both to the foot surgical incision and to my left thumb where they had put the pulsemeter during surgery). They had been treating me with oral antibiotics and fungals for 5 months since the surgery in March and then I had the CT myelogram/PDPH#2 in July. So I got a huge abcess under the thumb nail. New PCP sends me to the ER (at the hospital where I had surgery/contracted the infections). The ER doc says I don’t see anything, go back to the PCP.
They send me to a hand surgeon who literally ripped the nail right out of the nailbed and then sent it for cultures. The packing material got stuck so I was back a few days later to get that ripped off. He then squeezed the raw, no nail thumb with all his might (probably to stop the bleeding I guess) and when I stood up and screamed “I need pain meds” he said “you’re very sensitive to pain”. :eek: Normally I would have responded, but with the state of my head pain after I screamed and stood upright really fast I wasn’t doing anything but sitting back down and breathing deep. My head and face were constantly tingling so bad last summer/fall I couldn’t do ANYTHING!!!!!
So the cultures came back with heavy growth of 4 different staph infections :eek:(klebsiella pneumonia, serratia marcescens, pseudomonas auriginosa, enterococcus faecalis) and a fungal infection and the MRI shows osteomyelitis (an infection in the bone). They surgically installed an IV PICC line and begin 10 weeks of oral and IV meds. Had home health care come each day and run the IV. Very freaky!!!! They had to pull and install the IV surgically 3 times because it was causing nerve pain (I have a 15 year old RSD nerve damage injury to my right arm). Stress is a known activator of the RSD nerve pains and trust me walking around with an IV dangling from your arm for months, knowing that it is a direct line into your heart and bloodstream and another source and route of entry for infection is stressful. I got red man syndrome from the Vancomycin, they tried to pre-med with Benadryl (which makes you fall asleep). I have 4 LITTLE kids. Very dangerous!! I needed help but the ins. co considers that custodial care and will pay to drug you up and put you to sleep (no thanks) but will not pay to watch your 4 kids while you can't function. :confused:
They switched me to IV Cubicen. I finally made it through the treatment and then AFTER they stopped all the infection drugs I got 17 days of constant muscle spasms where every single muscle in my body was cramping (even my eyebrows and miniature muscles in my groin, muscles you don’t realize you have until they spasm and freak out). But the spasms only happened when I sat up (another weird positional phenomenon). The new PCP told me I had restless leg syndrome (really? 'cuz it doesn't happen at night while I sleep) and GERD. I came home and looked that up on the internet and I don't have one single symptom of GERD. I did, however, tell him that I wasn't taking anymore Lyrica 'cuz I had tried it 3 times now and it gave me the other kind of dizziness/lightheadedness and a bunch of other bad side effects and I wasn't willing to ruin my stomach for a drug that didn't do anything to help my head/nerve pain. The infectious disease prescribed a muscle relaxant but said it would put me to sleep (not OK with 4 little kids). ID pulled the blood and claim the lab lost it so I'll never know if it was the potassium or megnesium or what went out of whack to cause those 17 days of pure hell. The intense cramping did go away and the tingling head did eventually get milder. But now I still get “itchy head, itchy ears, itchy face” daily when I sit up for long periods.
My 4 year old daughter, Mackenzie, was with me through the whole IV drugs ordeal, snuggled up with me on the sofa while the nurses ran the meds. She has a smile that just melts all your problems away. She was so cute always hugging and kissing me through the nurses daily visits.
But last August she started having back pain that was waking her up in the night. My back was incredibly painful from Aug-December, so I tried to avoid this website or say anything out loud about how I was feeling because I kept taking Mackenzie to the doctor explaining that she was fine during the day (except for some random charley horse type muscle spasms), but she would grind her teeth (it sounded like she was chewing glass), thrash around in her sleep and then wake up screaming “my back, my back”. I kept taking her to the pediatrician, the xray was negative, the ER docs laughed us out of there telling us there was nothing wrong. The orthopedist told us she just needs attention, nothings wrong, kids do that sometimes. The dentist told us kids grind their teeth, don’t worry. They almost convinced me that I was crazy and that she was picking it all up from me. It was really hard because she is so smiley and cute and the doctors are only opened during the day (and her weird "muscle spasm like pain" only occured at night when she fell asleep or during her nap).
On Thanksgiving night I sent my husband to the ER (‘cuz they weren’t listening to me). They did an MRI and told him “negative, everything is fine”. My husband is latin and he said he had to fight with the ER doc to get him to take it seriously. We 1st called the pediatrician, but while waiting for the callback I told my husband "just go to the ER, 4 year olds don't have back pain every night while they sleep". The pediatrician later told us she had called the ER doc and told him she had heard Mackenzie screaming in pain on the message, and told the ER doc to put her in the MRI scanner. What we didn’t realize until just a few weeks ago was that they only imaged the lumbar and the nurse’s and triage notes say she was there for THORACIC back pain. I am so sick of the medical errors and misdiagnosises.
In the meantime the other 3 kids spent all of Nov and Dec with sinus and ear infections, sniffling and coughing their way through the allergy season, multiple antibiotics etc. I got her to PT in Nov, they said her scapula was winging . Back to the pediatrician who said she could feel something and was ordering imaging. Finally!!! But then had to contend with the holidays (no available MDs) and fight the cheapo insurance co who claimed they didn’t have funding.
Meanwhile the baby who’s had 11 ear infections in the past year, we had finally won the battle to get his insurance co to pay for tubes in the ears and to remove his adenoids to try to stop the chronic infections was finally scheduled for surgery Dec 4th. So my husband took him to surgery (he is a new man, he can now hear, he laughs, he immediately started talking, no infections since). :):) That same morning, I took Kenzie for her MRI of the C-T-L spine and they imaged a mass in the paraspinal muscle :eek:
We had been massaging what felt like a knot between her scapula and spine for weeks.
On Dec 15th we went to Miami Childrens Hospital for the biopsy. They did a CT that morning of the paraspinal muscle mass and also saw suspicious lung nodules. The biopsy was malignant so from the PICU her care was transferred to oncology. We stayed 3 days to get her workups and then they sent us home for Christmas. The tumor was imaged and extended from T1-T8. They said they would treat her as Stage IV unless proven otherwise (but without a lung biopsy they couldn’t be sure about the lung lesions) so have to do chemo for the paraspinal muscle tumor and if the lung doesn’t respond then they’ll do a biopsy.
She also has a very rare (less than 100,00 people worldwide) dermatologic skin condition, a form of mastocytosis called urticaria pigmentosa (UP) where she’s covered with spots (people always think she has chickenpox) that raise into red hives, sometimes fill with fluid when she gets a virus or allergic reaction and itch intensely. Well that condition, urticaria pigmentosa, prevents her from having most any pain medication, radioactive dye, or anesthesia (because those things are all mast cell degranulators and then have the potential of causing a mast cell release that can cause anaphalactic shock, total cardiac collapse, death etc).
So we left Miami with no definite diagnosis (except some type of cancer or cancerous tumor) just before Christmas, waiting for the pathology report to arrive. We thought we were going for a quick biopsy and left my mother home with 3 sick kids. It was pure torture to be separated with all 4 kids sick and 3 without Mommy & Daddy.
My head symptoms/ear symptoms/vertigo continue on (although I do looking back, especially after the July PDPH, see slow improvement). I’m still plagued by exhaustion, mental fog, memory problems, have a hard time sitting upright for long periods. I went and did a SINE study at University of Miami with Dr. Martinez-Arizala in October. That study showed decreased disc space at L1-L2, endplate irregularity and Schmorls nodes at L2 (the July CT mylogram/PDPH was done at L1). Buldging disc at L-4 and L-5 eccentric to the left. Disc protrusion at L5-S1 with posterior annual tear. Left paraspinal muscle is atrophied. And now there is a cystic structure adjacent to the S2 nerve root measuring 9x11 mm. Likely a tarlov cyst. (Hhhmmm now the subdural collection of fluid is gone but there’s a spinal nerve root lesion filled with spinal fluid after all of these PDPHs and EBPs). Kinda weird too my daughter's tumor is in her paraspinal muscle.
My new since Aug PCP that my ins co got for me recently screamed at me “I have all your reports and there is ABSOLUTELY NOTHING WRONG WITH YOU”. I asked for a referral to a neurologist (since I’m guessing the itchy head, ears, face must be related to some sort of nerve damage). He told me to use Head and Shoulders, I had dry skin on my head. Told him my sinus areas (forehead and cheeks) and ears were itchy (or mildly tingling) as well as the back of my head, scalp STILL. Should I put men's shampoo there too? I told him I was concerned because I now have a lump in the back of my neck & hair and that is how I first got to him (with a painful swollen lump the size of a bean that appeared in my armpit just before the infection abcessed to my hand and I started the IV antibiotics for the massive infections). So sorry to seek medical advice from a Dr. when I sense a change in my body. So if I am so crazy why don’t you refer me to a psychologist???
Between my misdiagnosises and Mackenzie’s I am so disappointed in the medical community right now. Maybe if the insurance co’s weren’t so cheap her cancer wouldn’t have metastasized. So now we are caught up in fighting for her masks and Tylenol (the only safe pain med she can take due to her other condition), medical supplies and nausea and diarrhea medicines they don’t want to pay for (things that are necessary due to the side effects caused by the toxic poisons they are using to try to save her).
We are fighting to get her to a childrens hospital where there are playrooms and toys and anything to make this more pleasant. Miami Childrens Hospital is 75 miles from home and this next set of chemo is all inpatient where they have to do 2,3 and 5 day admissions to flush the kidneys. I stupidly asked to go to a hospital close to home so that my 4 kids could remain together and we could leave 1 parent with her in the hospital and keep Anthony in Kindergarten and Alicia in 1st grade and just go to the hospital to be with her. What a mistake!!!! The hospital doesn't have the $$$, the volunteers, as many people to entertain her.
She got a fever in the middle of the night, went in through the ER with my husband, got misdiagnosed with appendicitis (no stomach pain, on the same day they had injected dye for a PET scan, and her other condition, urticaria pigmentosa (UP) is one with mast cells and inflammation in the GI tract). Hhhmmm there have been A LOT of kids on her floor who are recovering from appendicitis. I bet that’s an emergency surgery that the ins co pays for. Then some stupid nurse used Kenzie to teach another nurse how to access a port (permanent IV surgically implanted in her chest) WITHOUT GLOVES, they stabbed her 4 times. Now Kenzie is petrified of having the port accessed and screams and kicks and freaks out. To top it off, they switched her nurse in the middle of the night from an oncology nurse to a pediatric nurse and gave her a suppository (suppositories and rectal temps are not allowed when on chemo because of the risk of tear and the risk of infection in a child whose immune system has plummeted due to the toxic chemo drugs.
On the last admission we got a great nurse who was formerly a nurse at Joe Dimaggio childrens hospital. She educated us on gloves, medical waste containers, how to handle the pee & poop for 48 hours following discharge, toxic diaper disposal of the overnight diapers etc. But they don’t do that at the hospital she’s currently at and the insurance won’t pay for the disposal container, masks, gloves etc. Apparently the chemo can change your DNA. Great, so now that we were not using safe disposal methods, will my other 3 kids be able to conceive, carry a pregnancy or wind up with a healthy baby in their lifetimes? We used our toilet at home like we normally do, and I wiped up the vomit with the closest washcloth. I now know why this hospital doesn’t have a quality of care rating. Wish I had known such a thing when we started. We’re going back to Miami for the imaging and 2nd surgical look next week and then hopefully to Joe Dimaggio (a little closer in Broward) to continue on with the next set of chemos which they say are much worse.
We had to wait 2 weeks for the pathology report, and when they put in dye and reimaged the tumor it now shows from C5-T8 and there are multiple lung lesions. She started chemo New Years Eve and we are now about to start week 6 (re-imaging and another surgical look) of a 54 week protocol. My husband went out on unpaid FMLA December 4th (to help the baby recover from the ear/adenoid surgery for 2 weeks) and has never returned to work.
It is not possible for me with my health problems, 4 kids, 2 in school, 1 in the hospital to do this alone. My SSDI claim has been denied and I have to appeal and go in front of a judge. We just submitted Mackenzie's SSDI. They say it's faster and easier for kids with cancer.
In one of those strange twists of fate, has to be Karma, everything happens for a reason, in that moment you question if there really is a God, I was immediately sure there has to be because I just finished with my PICC line/massive infection experience. Just before Mackenzie’s cancer and her port placement. Now I know that it is possible to recover from a massive infection. I’m sure I will need that reminder somewhere along this cancer journey. A similar thing happened after the hurricanes (and the mold) where the kids got sick and then I, too, developed allergies. It was as if I had to suffer the same thing in order to understand it so that I could explain it to the doctors and fight to get my kids medical treatment. Anyways.
Thanks for listening. Best wishes to all of you in your journeys. I haven’t had time to catch up on your progresses in the past 6 months but we are now heading back to the hospitals with internet access with Mackenzie so I’m sure I’ll have lots of time to catch up very soon. Stay strong and never stop believing in a cure.
Sue