April 2, 2012
F/u appt with dermatologist who changes otc hydrocortisone to Diprolene 0.05% 2xdaily for 2-3 weeks to apply on neck over old biopsy site of lch lesion.
Appt with pediatrician for sick visit, London has bilat ear infection -starts on Cefdinir 2.5ml 1x daily for 10 days
April 23, 2012- Happy 1st Birthday London! We celebrated at home with family and friends.
April 24, 2012
Well child visit with pediatrician (1yr check-up)- still have ear infection, low grade temp, lost weight now 19.0lbs. Started on augmentin. Plan to re-check ears in 3 weeks.
May 5, 2012
Saw pediatrician to re-check ears. No ear infection! Yeah!!! Weight up to 19.5lbs! But has low grade temp still, blood work shows anemia. Start on ferrous sulfate 45mg daily.
June 28, 2012
This is our 1st every 3 month plan visit for MR of abdI(neuroblastoma), Cxray and labs(LCH), and urine protein markers HVA and VMA. Weight is good 20.8lbs, has low grade temp still. WBC low 3.5, hgb low 9.7, neutrophil low 1.0 CXRAY is normal. MRI still waiting results
Still June 28th @ night: receive phone call from hematologist/oncologist MRI shows a 2.9x3cm mass near psoas muscle right side lower abdomen/pelvis region. Was then told that by looking back to Februarys scans can "kind of see it then". What is this? Is it the LCH? is this neuroblastoma? Plan is for a PET/CT scan next week.
July 5, 2012
PET/CT scan. London was injected with radioactive dye Around 1pm, PET/CT performed later(sedated). Left hospital after recovery from sedation. Received urgent phone call, need to go back to hospital-at first I can't breathe, I can't stop my hands from shaking, or hold onto the steering wheel. I am sick. I think the worst. I am not able to hear well. Eventually I am able to comprehend what is being said. There was an error with the machine, I need to bring London back to repeat the PET and CT scans. I bring London back. I feel so bad about this, I hate myself for doing this to her, I will never forget how scared she was, and her crying. She was taped to the CT scan table(unable to be re-sedated for whatever reason), meanwhile in recovery and on ride towards home London has had an 8oz bottle of milk, a fruit snack, and a bag of goldfish crackers. The results of this test come the following week to me, it shows "hot spot" "red" spot in abd so it being active cells. Blood work shows neutrophil count back up 2300. The plan now is to have an ultrasound done to look more closely at mass in abdomen.
July 10, 2012
Ultrasound of abdomen showed ? lymph nodes? mass? not sure what it is. Was told most likely to be LCH in a lymph node. New plan is to have a guided biopsy.
July 16, 2012
Ultrasound guided biopsy-unable to perform, risk of rupturing colon. New plan CT guided biopsy with titanium coil placement. London is un-sedated, resedated, For this procedure had to go to interventional radiology in RIH building. Titaniul coil placed in case biopsy not enough, will be a "marker" for surgeon to go in and remove for biopsy.
July 17, 2012
saw covering pediatrician, London's balance is off, she is pulling at her ears, dry cough. Findings: there is fluid behind ear drum, but ear drums respond to air, so no infection " will work its way out" ? viral r/t cough.
July 18, 2012
Receive phone call from hematologist/oncologist biopsy specimen not enough to determine etiology. Moving to plan B, surgery to remove mass. Told hematologist/oncologist about concern for London's ears/balance.
July 23, 2012
Surgery to remove abdominal mass via old lap sites. Was later told by surgeon removed "whole mass with coil". Surgeon said this is not a diagnosis or pathology, but it "looks like fat". I said what? and he repeated it doesn;t look like much of anything, like fat tissue. So now I go home and am very excitied after looking all this up online that indeed, brown fat in babies can show up as a "hot" spot and as being"red" on a CT scan. We are still waiting for confirmation on this from hematologist/oncologist.
July 25, 2012
Receive phone call from hematologist/oncologist" good news" pathology is brown fat! Yes! We can breathe again, life can resume again. We start to funtion normally again, this feeling only lasts for about a week.
Still July 25, 2012- London has her 15 month old check-up with pediatrician. Balance is still off, has back step when standing still. Falling down frequently. How I describe this is its as if a ghost were behind London and all of a sudden, giving her a push, she back steps, and tries to regain her composure. Still small amount of water behind ear drums, pediatrician does not think it is enough to cause such ataxia. Pediatrician to speak to hematologist/oncologist. Both agree for London to see an ENT.
July 30, 2012
ENT: hearing test findins sl. elevated(apparently this is bad, not good), fluid behind left ear, and "spots" on right ear are "bubbles"(residual -like soap left after a car wash) 3 layers on drum, trapped in layers-was considered normal. London started on Flonase(to open up E-tube to help drain fluid) ENT does not want to "blame balance on ears, esp since London has had a neuroblastoma. ENT to speak with hemat/oncologist.
August 2, 2012
F/u appt with hematologist/oncologist. All labs repeated. All within normal limits. Wants to address ataxia/balance. ? if London has OMS (opsoclonus myoclonus syndrome). At this point I don't realize OMS exactly means, I remember reading something about it along the way. Later when I go home and look everything up, I feel a tightening in my chest. Can this really be happening? I pray to GOD. We receive a phone call later that evening from the hematologist/oncologist, who has spoken to a doctor in Illinois who specializes in OMS. We are to fly out so he can meet London, and perform and lumbar puncture to test her spinal fluid for OMS. Chaos disrupts in our hosehold. My husband is heartbroken and sick that this is happening to his baby girl. He will have to stay at home and care for all the other children. Just London and me are going. Which is scary in itself.
August 7, 2012
London and I meet with Dr. Pranzatelli in his neurology clinic in Illinois around 9am. They try to perform neuro exams/videos of London. I say try to because London doesn't want anything to do with this. She is miserable. I think from flying in, and non-stop going, she is exhausted. They do the lumbar puncture around 11am. Lumbar puncture went well. Dr. Pranzatelli also is sending some fluid to be checked for LCH. As a note London never had nystagmus which is where the word opsoclonus comes in. (nystagmus is rapid eye movement-actually when my son was younger, her saw an eye docotor because of this). After what seemed like a very long time(its like watching the clock for it to change), we received the results. There was no evidence of OMS.!!! Thankyou again GOD!!! All tests came back negative! There was also no LCH involvement with the spinal fluid(meaning CNS-central nervous system)!!! However, 2 labs did come back off. NSE (neuron specific enolase)-this is a tumor marker. London's was 16.8ug/l (nl 3.7-8.9), and her IgA which was slightly low at 12 (nl 14-123). This was thought to be "coming down" from when she had her neuroblastoma. Dr. Pranzatelli's suggestion would be to re-test serum NSE in 6 months. Also, an MRI of London's brain had never been ordered, so he requested that be done when we get back home. London still has back step, and balance is still off at this point. But we are VERY happy and lucky not to have OMS. Throughout all of this so far that London and our family has been going through, we have found a lot of support from the bible, and increased our faith. I believe in the power of prayer. Frequently I have posted to Guideposts (magazine) online requesting prayers from their prayer group. London has also been on many church, including our own St. Barnabas, prayer requests. Father John has come to the hospital many times to pray over London, and a group of special women at our church knitted a prayer blanket for London. I am so grateful for all your prayers. At this point in the story there is one more doctor London needs to see, a neurologist here.
August 30, 2012
Met with neurologist, balance is still off, but not as bad. Back stepping still there also, but not as bad, London is not falling down anymore at this point. Neurologist recommends Gamma Globulin. This would have been treatment for OMS. OMS came back negative. London is around 16 months at this time. We refuse the gamma globulin. We have no diagnosis, gamma globulin is made up of other peoples body fluid, is very expensive and not covered by insurance without a diagnosis. We opt to wait and watch London since she is just 16 months old and see how she does. Now, once again life settles back into a semi-normal, if we can remember what "normal" is routine. My husband is a cubmaster(and a Den leader) for our sons' cubscouts, and he coaches our sons little leage team. We also have cheerleading, girlscouts, and High school baseball for one of our older sons. Things are going well. We are happy, we are starting to relax after a crazy 1/2 of the year. September now comes around and I realize (how can you forget) London is due for her every 3 month MRI of her abdomen(for neuroblastoma) and CXRAY and labs for LCH. I call towards the end of September to sched and appt. I leave a message with the secretary, who states she will leave a message for the hematologist/oncologist and have everything set up(sedation, MRI, CXRAY, appt in clinic, etc). I hear nothing back. It is now mid to late October, I call back and leave another message with an annoyed secretary who tells me people have been off, and it takes time to set all this up. I wait 2 weeks and call again, yes they have booked it for November 15th. I am anxious to get this done. I am very optomisitc at this point but a little aggravated with all the wait, since technically this was due in September.
November 15, 2012
By now London's balance has improved greatly, and does not exhibit the back stepping anymore. Today London is having an MRI, CXRAY, labs and urine for protein markers(vma and hva). We receive a phone call later from the hematologist/oncologist that we will never forget. We are told, " still showing abdominal mass in her right lower abdomen on the MRI". I can't even begin to explain or describe how we feel at this moment. At first we think, no, this must be a mistake, thats impossible, it was removed. Then we start to realize that the wrong thing was removed. Brown fat had been taken out, and not the mass. Which meant the coil had been placed in the wrong spot by the radiologist, if the surgeon had removed the mass with the titanium coil in it. Once again it is like the ground was ripped out from under us. But believe it or not, this is just the beginning of the news -we will soon find out more the following week, after the hematologist/oncologist has tumor board meeting and discusses London's case. We are then told we will have an appt to go over the plans following the tumor board meeting on Thurs November 29th at 2pm.
November 29, 2012
F/u appt following tumor board meeting with hematologist/oncologist. The abdominal mass has now technically been there since February of 2012, it is the same size as it was in June(on MRI), but the volume has decreased. What does this mean? Is it LCH? Neuroblastoma? is it going away on its own? We also receive more devestating news: Looking at all of London's scans during the tumor board meeting, it was called to attention a "spot" on her spine, T11 (thoracic 11) specifically. We are told looking back from Junes scans, they can see it there as well, it is the same size as it was in June, but brighter-whatever that means-no one seems to know. Is this neuroblastoma? LCH? or something new? I can't do this anymore. Coming in every 3 months and having them tell me, looking back we can see "this" on prior scans. We are so scared. London is now 19 months. If this is neuroblastoma she is past that cut off date for where it is considered low-intermediate risk level of treatment, her age puts her in a high treatment/hard to treat category, and if it is neuroblastoma its on her abdomen , and on her spine, and was in her adrenal gland! What stage would this make her???? My anxiety is starting to overtake me at this point. I start to shut down. I need to stay strong for London, my husband, my kids. This is just so hard. I talk to my husband. The hospital we are at now wants to do more testing, an MIBG scan. ? We are told they want to re-attempt to biopsy abdominal mass, there is someone who thinks he can do it. They want to biopsy spine. Then I overhear in hallway after hematologist/oncologist is paged, that no they will not biopsy spinal mass. I don;t feel safe. I need to protect London. I need to leave this hospital. We contact another hospital, Boston Children's Hospital, The Jimmy Fund at Dana Farber Cancer and are contacted back quite quickly. I call and speak with London's hematologist/oncologist and explain our decision and reasons. Over the next week they send everything over to Boston for review, prior to London's new appt at the Jimmy Fund. We receive a phone call that we have an appt at the Jimmy Fund on December 20, 2012. I can not begin to tell you the relief that we feel already. A calm has come over us. We are happy to be able to go to Boston and be seen there.
December 20, 2012
Our first visit to the Jimmy Fund Clinic at Dana Farber in Boston. We met with the oncologist who is an expert in neuroblastoma. We talked about all that had happened within 2012 up until now. The plan was for London to have an MIBG scan. MIBG scan is a nuclear test where a radioactive isotope is injected into you and neuroblastomas absorb this "dye" and it shows up on a scan. MIBG was scheduled for January 3rd & the 4th.
January 3, 2013
London is injected with the isotope. She has started on SSKI drops to protect her thyroid yesterday. Tommorrow will be the scan.
January 4, 2013
MIBG scan. The results: negative. MIBG is specific to neuroblastomas, although 5-10% of neuroblastomas do not absorb this isotope. So is Londno in the 5-10%, or is this not neuroblastoma? or is it neuroblastoma that has matured and is benign? I don't know. I would like to think this isn't neuroblastoma. I keep my hopes up, I keep praying. Again to recap neuroblastoma is immature nerve cells that are actively dividing and making new cells. Neuroblastoma is the only type of cancer that can actually become non-cancerous.(it can matue and stop dividing)-usually this happens in infancy per what I have read. So the next plan is for an MRI of the spine and abdomen.
January 8, 2013
MRI of spine and abdomen. London is sedated for this(she is sedated for most of her tests). The MRI was very long, around 3hrs being sedated so I figured we would have a problem at night. When London had her first surgery to remove her adrenal gland last March at night she spiked high fevers. It was explained to me by her surgeon about sedation and lung re-explansion probable cause of fever. So following her MRI sedation, London was fine in recovery, late at night her fever was up to 102.5 rectal. I gave fluids, and tylenol, and in the morning she was back to herself-no fever, no problems.
January 10, 2013
F/u appt with oncologist @ Jimmy Fund, also met with LCH specialist. Good news!!! MRI shows- No mass in abdomen. Think its gone!! (remember this is the spot that showed up as "red or hot" on CT scan. We had prayed and prayed for this. Thankyou GOD for answering our prayers. The MRI did still show spot on spine as from previous hospital on T11, and there is a question if there is a spot on her spine in her neck C4. Plan, following this visit to go downstairs in Childrens hospital and have xray of neck. London also had urine re-checked and labs.
Received email: xray completely normal, labs normal. New plan is for oncologist to discuss London's case on Tues at radiology conference and will call me following.
January 16, 2013
Received phone call from oncologist may or may not be something on neck at C4, T11 same size, if it is LCH would most likely be treated(with chemo). Do we want to biopsy site T11 and finally find out what this is ? Yes. It will be planned for next week as an outpt biopsy guided in nuclear with CT. Today will be the first time London complains of a" boo boo". She tells me to "kiss it" I ask her where, and she tells me her back. When I say where on your back, she is pointing to the back of her neck- a bit above where site C4 is located. After I kiss it, it is dropped and not mentioned again for another week.
January 22, 2013
Interventional radiology- Bone Biopsy -site T11. Outpt. London did great. No complications. Results may be back in next week. This is another one of our "long" weeks. This has been in her since June of 2012. What is it? We pray. We are ready to accept and hear that it is LCH. I have done all my research. I know that chemo can take LCH away, but LCH could still come back, and can be re-treated with good results again with the same chemo. I know this is not the case with neuroblastoma. I know that chemo can take away neuroblastoma also, and neuroblastoma may also come back, except it comes back more aggressive-the chemo used previously won't work.
January 29, 2013
We receive the phone call we have been waiting for. My heart is already in my throat before I even get to the phone. My heartbeat is so loud it is pulsating in my ears. I concentrate on breathing and am able to barely speak a Hello. It is London's oncologist. She feels bad to tell us this over the phone, but the biopsy came back, it is neuroblatoma. It is a shock. I am not ready for this. I don't want to hear this. I wanted to hear it was LCH. I was ready for that. I think about London, I think about my husband, he is at work, I need to call him and let him know. I don't even know how I ended the conversation with the doctor. I don't really remember anything after that. I just wanted to lay down and forget this is even happening. How is this happening. We have all these children. How is this happening to our baby girl? We don't know anyone around here that this has happened to. We feel alone, isolated from everyone. I wish I could take this for her.
February 6, 2013
Things start to pick up a little faster now. Today London is scheduled to have a bone marrow biopsy. We find out that this is negative. Again, Thankyou GOD. Tommorrow London is scheduled for a PET/CT scan and Bone scan.
February 7, 2013
PET/CT scan and Bone scan. A bone scan is when you are injected with radioactive dye and tumors, bone infections, etc show up either darker or lighter depending on what they are on the scan. At night I go on the computer to Guideposts and post a prayer request. Please I ask, Please let London's tests come back negative. I give a little update on her and how last time I came to this for a prayer request, the mass in her abdomen dissapeared.
February 12, 2013
Receive phone call from oncologist. PET/CT and Bone scan are all negative. I am speechless for a moment. What? How does that make sense? What does this mean? The bone biopsy showed "active"(dividing) neuroblastoma. It did not show up on any of these tests. This is unheard of. This is a miracle. The praying was heard. GOD answered. I am starting to feel Joy. I am happy. GOD I say, I don't understand your plan here, but please heal London. Let her live a long healthy life on this Earth first. I ask this in Jesus' name. I let go. I give it to GOD. I need to let go. I need to trust in GOD. All at once I feel a calm come over me. I feel like everything is going to be okay. I call my husband and let him know.
February 14, 2013
We meet with the oncologist and RNP to talk about "options". London's oncologist has spoken to people from across the country. London is unique. London is a mystery. London is not a textbook case. To recap: London is healthy.(she has had a few ear infections, and 1 viral bronchitis). She has never been positive for VMA or HVA(proteins in urine for neuroblastoma), her original pathology from the neuroblastoma in her adrenal gland(now almost a year ago) was favorable histology. Meaning it had 1 MYCN, right amount of chromosomes, etc. And this is all ACCIDENTLY found. If we had never had that spot on her neck biopsied, they would have never checked for more LCH in her body, meaning they would have never found the neuroblastoma. She would be walking around right now with all this inside of her! It is also very possible why LCH is underdiagnosed is because some people think it is an insect bite, and it goes away. LCH skin lesions can do that. London only had that one spot. Was this an accident, or was this LCH given to London to save her. So we would find the neuroblstoma. The oncologist tells me that London is a stage 4. She can not be a stage 4s(which is a special type of neuroblastoma that is very treatable and can go away on its own-4s can not have bone involvement, and does involve the liver. London's liver that we know of has never been affected.) So what was in her abdomen that disappeared. A ganglioneuroma? A neuroblastoma that matured. (Remember I had told you that we were told the volume had decreased). We had 2 options. We could either "wait and watch" or try chemo. Even though London is now 22 months old, and is a stage 4, London's oncologist feels like because of the pathology of the original tumor(favorable histology) she would be placed in intermediate risk group.( the pathology on the biopsy of the spine was not enough of a sample to do a pathology on- London's oncologist said "what you have is usually what you have-it diesn;t change-so we assume favorable histology as well) Other doctors she said would put London in high risk group and some would "wait and watch". If we chose to "wait and watch" we would repeat MRI's of spine/abd in 3 months and go from there. We also went over chemo treatment plan if we chose to take this route. Throughout all this, London is in the room and is highly active, jumping off footstool on end of bed, emptying out her toys all over the floor, dumping her fruit snack package upside down to spill out its contents, it is a crazy scene and it for me is going in slow motion. It is later now, probably around 4pm. My brain is fried. I am exhausted. I take in as much information as I can. We don't have to decide anything now-which I am grateful for. I take all the information home to go over with my husband and we have a week to decide. It is February vacation. All the kids are home. I want to have a "normal" week. Today is also our wedding anniversary, I don't get home becuase of traffic until almost 8pm. London is exhausted. I am grateful to be home, I just want to sit down and not think of anything-until tommorrow.
F/u appt with dermatologist who changes otc hydrocortisone to Diprolene 0.05% 2xdaily for 2-3 weeks to apply on neck over old biopsy site of lch lesion.
Appt with pediatrician for sick visit, London has bilat ear infection -starts on Cefdinir 2.5ml 1x daily for 10 days
April 23, 2012- Happy 1st Birthday London! We celebrated at home with family and friends.
April 24, 2012
Well child visit with pediatrician (1yr check-up)- still have ear infection, low grade temp, lost weight now 19.0lbs. Started on augmentin. Plan to re-check ears in 3 weeks.
May 5, 2012
Saw pediatrician to re-check ears. No ear infection! Yeah!!! Weight up to 19.5lbs! But has low grade temp still, blood work shows anemia. Start on ferrous sulfate 45mg daily.
June 28, 2012
This is our 1st every 3 month plan visit for MR of abdI(neuroblastoma), Cxray and labs(LCH), and urine protein markers HVA and VMA. Weight is good 20.8lbs, has low grade temp still. WBC low 3.5, hgb low 9.7, neutrophil low 1.0 CXRAY is normal. MRI still waiting results
Still June 28th @ night: receive phone call from hematologist/oncologist MRI shows a 2.9x3cm mass near psoas muscle right side lower abdomen/pelvis region. Was then told that by looking back to Februarys scans can "kind of see it then". What is this? Is it the LCH? is this neuroblastoma? Plan is for a PET/CT scan next week.
July 5, 2012
PET/CT scan. London was injected with radioactive dye Around 1pm, PET/CT performed later(sedated). Left hospital after recovery from sedation. Received urgent phone call, need to go back to hospital-at first I can't breathe, I can't stop my hands from shaking, or hold onto the steering wheel. I am sick. I think the worst. I am not able to hear well. Eventually I am able to comprehend what is being said. There was an error with the machine, I need to bring London back to repeat the PET and CT scans. I bring London back. I feel so bad about this, I hate myself for doing this to her, I will never forget how scared she was, and her crying. She was taped to the CT scan table(unable to be re-sedated for whatever reason), meanwhile in recovery and on ride towards home London has had an 8oz bottle of milk, a fruit snack, and a bag of goldfish crackers. The results of this test come the following week to me, it shows "hot spot" "red" spot in abd so it being active cells. Blood work shows neutrophil count back up 2300. The plan now is to have an ultrasound done to look more closely at mass in abdomen.
July 10, 2012
Ultrasound of abdomen showed ? lymph nodes? mass? not sure what it is. Was told most likely to be LCH in a lymph node. New plan is to have a guided biopsy.
July 16, 2012
Ultrasound guided biopsy-unable to perform, risk of rupturing colon. New plan CT guided biopsy with titanium coil placement. London is un-sedated, resedated, For this procedure had to go to interventional radiology in RIH building. Titaniul coil placed in case biopsy not enough, will be a "marker" for surgeon to go in and remove for biopsy.
July 17, 2012
saw covering pediatrician, London's balance is off, she is pulling at her ears, dry cough. Findings: there is fluid behind ear drum, but ear drums respond to air, so no infection " will work its way out" ? viral r/t cough.
July 18, 2012
Receive phone call from hematologist/oncologist biopsy specimen not enough to determine etiology. Moving to plan B, surgery to remove mass. Told hematologist/oncologist about concern for London's ears/balance.
July 23, 2012
Surgery to remove abdominal mass via old lap sites. Was later told by surgeon removed "whole mass with coil". Surgeon said this is not a diagnosis or pathology, but it "looks like fat". I said what? and he repeated it doesn;t look like much of anything, like fat tissue. So now I go home and am very excitied after looking all this up online that indeed, brown fat in babies can show up as a "hot" spot and as being"red" on a CT scan. We are still waiting for confirmation on this from hematologist/oncologist.
July 25, 2012
Receive phone call from hematologist/oncologist" good news" pathology is brown fat! Yes! We can breathe again, life can resume again. We start to funtion normally again, this feeling only lasts for about a week.
Still July 25, 2012- London has her 15 month old check-up with pediatrician. Balance is still off, has back step when standing still. Falling down frequently. How I describe this is its as if a ghost were behind London and all of a sudden, giving her a push, she back steps, and tries to regain her composure. Still small amount of water behind ear drums, pediatrician does not think it is enough to cause such ataxia. Pediatrician to speak to hematologist/oncologist. Both agree for London to see an ENT.
July 30, 2012
ENT: hearing test findins sl. elevated(apparently this is bad, not good), fluid behind left ear, and "spots" on right ear are "bubbles"(residual -like soap left after a car wash) 3 layers on drum, trapped in layers-was considered normal. London started on Flonase(to open up E-tube to help drain fluid) ENT does not want to "blame balance on ears, esp since London has had a neuroblastoma. ENT to speak with hemat/oncologist.
August 2, 2012
F/u appt with hematologist/oncologist. All labs repeated. All within normal limits. Wants to address ataxia/balance. ? if London has OMS (opsoclonus myoclonus syndrome). At this point I don't realize OMS exactly means, I remember reading something about it along the way. Later when I go home and look everything up, I feel a tightening in my chest. Can this really be happening? I pray to GOD. We receive a phone call later that evening from the hematologist/oncologist, who has spoken to a doctor in Illinois who specializes in OMS. We are to fly out so he can meet London, and perform and lumbar puncture to test her spinal fluid for OMS. Chaos disrupts in our hosehold. My husband is heartbroken and sick that this is happening to his baby girl. He will have to stay at home and care for all the other children. Just London and me are going. Which is scary in itself.
August 7, 2012
London and I meet with Dr. Pranzatelli in his neurology clinic in Illinois around 9am. They try to perform neuro exams/videos of London. I say try to because London doesn't want anything to do with this. She is miserable. I think from flying in, and non-stop going, she is exhausted. They do the lumbar puncture around 11am. Lumbar puncture went well. Dr. Pranzatelli also is sending some fluid to be checked for LCH. As a note London never had nystagmus which is where the word opsoclonus comes in. (nystagmus is rapid eye movement-actually when my son was younger, her saw an eye docotor because of this). After what seemed like a very long time(its like watching the clock for it to change), we received the results. There was no evidence of OMS.!!! Thankyou again GOD!!! All tests came back negative! There was also no LCH involvement with the spinal fluid(meaning CNS-central nervous system)!!! However, 2 labs did come back off. NSE (neuron specific enolase)-this is a tumor marker. London's was 16.8ug/l (nl 3.7-8.9), and her IgA which was slightly low at 12 (nl 14-123). This was thought to be "coming down" from when she had her neuroblastoma. Dr. Pranzatelli's suggestion would be to re-test serum NSE in 6 months. Also, an MRI of London's brain had never been ordered, so he requested that be done when we get back home. London still has back step, and balance is still off at this point. But we are VERY happy and lucky not to have OMS. Throughout all of this so far that London and our family has been going through, we have found a lot of support from the bible, and increased our faith. I believe in the power of prayer. Frequently I have posted to Guideposts (magazine) online requesting prayers from their prayer group. London has also been on many church, including our own St. Barnabas, prayer requests. Father John has come to the hospital many times to pray over London, and a group of special women at our church knitted a prayer blanket for London. I am so grateful for all your prayers. At this point in the story there is one more doctor London needs to see, a neurologist here.
August 30, 2012
Met with neurologist, balance is still off, but not as bad. Back stepping still there also, but not as bad, London is not falling down anymore at this point. Neurologist recommends Gamma Globulin. This would have been treatment for OMS. OMS came back negative. London is around 16 months at this time. We refuse the gamma globulin. We have no diagnosis, gamma globulin is made up of other peoples body fluid, is very expensive and not covered by insurance without a diagnosis. We opt to wait and watch London since she is just 16 months old and see how she does. Now, once again life settles back into a semi-normal, if we can remember what "normal" is routine. My husband is a cubmaster(and a Den leader) for our sons' cubscouts, and he coaches our sons little leage team. We also have cheerleading, girlscouts, and High school baseball for one of our older sons. Things are going well. We are happy, we are starting to relax after a crazy 1/2 of the year. September now comes around and I realize (how can you forget) London is due for her every 3 month MRI of her abdomen(for neuroblastoma) and CXRAY and labs for LCH. I call towards the end of September to sched and appt. I leave a message with the secretary, who states she will leave a message for the hematologist/oncologist and have everything set up(sedation, MRI, CXRAY, appt in clinic, etc). I hear nothing back. It is now mid to late October, I call back and leave another message with an annoyed secretary who tells me people have been off, and it takes time to set all this up. I wait 2 weeks and call again, yes they have booked it for November 15th. I am anxious to get this done. I am very optomisitc at this point but a little aggravated with all the wait, since technically this was due in September.
November 15, 2012
By now London's balance has improved greatly, and does not exhibit the back stepping anymore. Today London is having an MRI, CXRAY, labs and urine for protein markers(vma and hva). We receive a phone call later from the hematologist/oncologist that we will never forget. We are told, " still showing abdominal mass in her right lower abdomen on the MRI". I can't even begin to explain or describe how we feel at this moment. At first we think, no, this must be a mistake, thats impossible, it was removed. Then we start to realize that the wrong thing was removed. Brown fat had been taken out, and not the mass. Which meant the coil had been placed in the wrong spot by the radiologist, if the surgeon had removed the mass with the titanium coil in it. Once again it is like the ground was ripped out from under us. But believe it or not, this is just the beginning of the news -we will soon find out more the following week, after the hematologist/oncologist has tumor board meeting and discusses London's case. We are then told we will have an appt to go over the plans following the tumor board meeting on Thurs November 29th at 2pm.
November 29, 2012
F/u appt following tumor board meeting with hematologist/oncologist. The abdominal mass has now technically been there since February of 2012, it is the same size as it was in June(on MRI), but the volume has decreased. What does this mean? Is it LCH? Neuroblastoma? is it going away on its own? We also receive more devestating news: Looking at all of London's scans during the tumor board meeting, it was called to attention a "spot" on her spine, T11 (thoracic 11) specifically. We are told looking back from Junes scans, they can see it there as well, it is the same size as it was in June, but brighter-whatever that means-no one seems to know. Is this neuroblastoma? LCH? or something new? I can't do this anymore. Coming in every 3 months and having them tell me, looking back we can see "this" on prior scans. We are so scared. London is now 19 months. If this is neuroblastoma she is past that cut off date for where it is considered low-intermediate risk level of treatment, her age puts her in a high treatment/hard to treat category, and if it is neuroblastoma its on her abdomen , and on her spine, and was in her adrenal gland! What stage would this make her???? My anxiety is starting to overtake me at this point. I start to shut down. I need to stay strong for London, my husband, my kids. This is just so hard. I talk to my husband. The hospital we are at now wants to do more testing, an MIBG scan. ? We are told they want to re-attempt to biopsy abdominal mass, there is someone who thinks he can do it. They want to biopsy spine. Then I overhear in hallway after hematologist/oncologist is paged, that no they will not biopsy spinal mass. I don;t feel safe. I need to protect London. I need to leave this hospital. We contact another hospital, Boston Children's Hospital, The Jimmy Fund at Dana Farber Cancer and are contacted back quite quickly. I call and speak with London's hematologist/oncologist and explain our decision and reasons. Over the next week they send everything over to Boston for review, prior to London's new appt at the Jimmy Fund. We receive a phone call that we have an appt at the Jimmy Fund on December 20, 2012. I can not begin to tell you the relief that we feel already. A calm has come over us. We are happy to be able to go to Boston and be seen there.
December 20, 2012
Our first visit to the Jimmy Fund Clinic at Dana Farber in Boston. We met with the oncologist who is an expert in neuroblastoma. We talked about all that had happened within 2012 up until now. The plan was for London to have an MIBG scan. MIBG scan is a nuclear test where a radioactive isotope is injected into you and neuroblastomas absorb this "dye" and it shows up on a scan. MIBG was scheduled for January 3rd & the 4th.
January 3, 2013
London is injected with the isotope. She has started on SSKI drops to protect her thyroid yesterday. Tommorrow will be the scan.
January 4, 2013
MIBG scan. The results: negative. MIBG is specific to neuroblastomas, although 5-10% of neuroblastomas do not absorb this isotope. So is Londno in the 5-10%, or is this not neuroblastoma? or is it neuroblastoma that has matured and is benign? I don't know. I would like to think this isn't neuroblastoma. I keep my hopes up, I keep praying. Again to recap neuroblastoma is immature nerve cells that are actively dividing and making new cells. Neuroblastoma is the only type of cancer that can actually become non-cancerous.(it can matue and stop dividing)-usually this happens in infancy per what I have read. So the next plan is for an MRI of the spine and abdomen.
January 8, 2013
MRI of spine and abdomen. London is sedated for this(she is sedated for most of her tests). The MRI was very long, around 3hrs being sedated so I figured we would have a problem at night. When London had her first surgery to remove her adrenal gland last March at night she spiked high fevers. It was explained to me by her surgeon about sedation and lung re-explansion probable cause of fever. So following her MRI sedation, London was fine in recovery, late at night her fever was up to 102.5 rectal. I gave fluids, and tylenol, and in the morning she was back to herself-no fever, no problems.
January 10, 2013
F/u appt with oncologist @ Jimmy Fund, also met with LCH specialist. Good news!!! MRI shows- No mass in abdomen. Think its gone!! (remember this is the spot that showed up as "red or hot" on CT scan. We had prayed and prayed for this. Thankyou GOD for answering our prayers. The MRI did still show spot on spine as from previous hospital on T11, and there is a question if there is a spot on her spine in her neck C4. Plan, following this visit to go downstairs in Childrens hospital and have xray of neck. London also had urine re-checked and labs.
Received email: xray completely normal, labs normal. New plan is for oncologist to discuss London's case on Tues at radiology conference and will call me following.
January 16, 2013
Received phone call from oncologist may or may not be something on neck at C4, T11 same size, if it is LCH would most likely be treated(with chemo). Do we want to biopsy site T11 and finally find out what this is ? Yes. It will be planned for next week as an outpt biopsy guided in nuclear with CT. Today will be the first time London complains of a" boo boo". She tells me to "kiss it" I ask her where, and she tells me her back. When I say where on your back, she is pointing to the back of her neck- a bit above where site C4 is located. After I kiss it, it is dropped and not mentioned again for another week.
January 22, 2013
Interventional radiology- Bone Biopsy -site T11. Outpt. London did great. No complications. Results may be back in next week. This is another one of our "long" weeks. This has been in her since June of 2012. What is it? We pray. We are ready to accept and hear that it is LCH. I have done all my research. I know that chemo can take LCH away, but LCH could still come back, and can be re-treated with good results again with the same chemo. I know this is not the case with neuroblastoma. I know that chemo can take away neuroblastoma also, and neuroblastoma may also come back, except it comes back more aggressive-the chemo used previously won't work.
January 29, 2013
We receive the phone call we have been waiting for. My heart is already in my throat before I even get to the phone. My heartbeat is so loud it is pulsating in my ears. I concentrate on breathing and am able to barely speak a Hello. It is London's oncologist. She feels bad to tell us this over the phone, but the biopsy came back, it is neuroblatoma. It is a shock. I am not ready for this. I don't want to hear this. I wanted to hear it was LCH. I was ready for that. I think about London, I think about my husband, he is at work, I need to call him and let him know. I don't even know how I ended the conversation with the doctor. I don't really remember anything after that. I just wanted to lay down and forget this is even happening. How is this happening. We have all these children. How is this happening to our baby girl? We don't know anyone around here that this has happened to. We feel alone, isolated from everyone. I wish I could take this for her.
February 6, 2013
Things start to pick up a little faster now. Today London is scheduled to have a bone marrow biopsy. We find out that this is negative. Again, Thankyou GOD. Tommorrow London is scheduled for a PET/CT scan and Bone scan.
February 7, 2013
PET/CT scan and Bone scan. A bone scan is when you are injected with radioactive dye and tumors, bone infections, etc show up either darker or lighter depending on what they are on the scan. At night I go on the computer to Guideposts and post a prayer request. Please I ask, Please let London's tests come back negative. I give a little update on her and how last time I came to this for a prayer request, the mass in her abdomen dissapeared.
February 12, 2013
Receive phone call from oncologist. PET/CT and Bone scan are all negative. I am speechless for a moment. What? How does that make sense? What does this mean? The bone biopsy showed "active"(dividing) neuroblastoma. It did not show up on any of these tests. This is unheard of. This is a miracle. The praying was heard. GOD answered. I am starting to feel Joy. I am happy. GOD I say, I don't understand your plan here, but please heal London. Let her live a long healthy life on this Earth first. I ask this in Jesus' name. I let go. I give it to GOD. I need to let go. I need to trust in GOD. All at once I feel a calm come over me. I feel like everything is going to be okay. I call my husband and let him know.
February 14, 2013
We meet with the oncologist and RNP to talk about "options". London's oncologist has spoken to people from across the country. London is unique. London is a mystery. London is not a textbook case. To recap: London is healthy.(she has had a few ear infections, and 1 viral bronchitis). She has never been positive for VMA or HVA(proteins in urine for neuroblastoma), her original pathology from the neuroblastoma in her adrenal gland(now almost a year ago) was favorable histology. Meaning it had 1 MYCN, right amount of chromosomes, etc. And this is all ACCIDENTLY found. If we had never had that spot on her neck biopsied, they would have never checked for more LCH in her body, meaning they would have never found the neuroblastoma. She would be walking around right now with all this inside of her! It is also very possible why LCH is underdiagnosed is because some people think it is an insect bite, and it goes away. LCH skin lesions can do that. London only had that one spot. Was this an accident, or was this LCH given to London to save her. So we would find the neuroblstoma. The oncologist tells me that London is a stage 4. She can not be a stage 4s(which is a special type of neuroblastoma that is very treatable and can go away on its own-4s can not have bone involvement, and does involve the liver. London's liver that we know of has never been affected.) So what was in her abdomen that disappeared. A ganglioneuroma? A neuroblastoma that matured. (Remember I had told you that we were told the volume had decreased). We had 2 options. We could either "wait and watch" or try chemo. Even though London is now 22 months old, and is a stage 4, London's oncologist feels like because of the pathology of the original tumor(favorable histology) she would be placed in intermediate risk group.( the pathology on the biopsy of the spine was not enough of a sample to do a pathology on- London's oncologist said "what you have is usually what you have-it diesn;t change-so we assume favorable histology as well) Other doctors she said would put London in high risk group and some would "wait and watch". If we chose to "wait and watch" we would repeat MRI's of spine/abd in 3 months and go from there. We also went over chemo treatment plan if we chose to take this route. Throughout all this, London is in the room and is highly active, jumping off footstool on end of bed, emptying out her toys all over the floor, dumping her fruit snack package upside down to spill out its contents, it is a crazy scene and it for me is going in slow motion. It is later now, probably around 4pm. My brain is fried. I am exhausted. I take in as much information as I can. We don't have to decide anything now-which I am grateful for. I take all the information home to go over with my husband and we have a week to decide. It is February vacation. All the kids are home. I want to have a "normal" week. Today is also our wedding anniversary, I don't get home becuase of traffic until almost 8pm. London is exhausted. I am grateful to be home, I just want to sit down and not think of anything-until tommorrow.