My baby princess, Felicity Renee
Juarez was born October 30th, 2014. She was just recently treated by
the expert doctors at Cincinnati Children’s Hospital Medical Center for a tumor
on her neck which I first noticed on January 5th, 2015 (when she was
just 2 months old). They were able to completely excise it on February 18th
and she is recovering wonderfully! AMEN, THANK
YOU JESUS!!! What a long road it took to get here, though. It started as an
almost unnoticeable, elongated 1 inch lump in the left, supraclavicular area,
then and grew to the size of a tennis ball by February 18th! We went
through many misdiagnoses in Lansing, Okemos, and Ann Arbor, before getting on
the right road, I-75 South to Cincinnati, Ohio! By the grace of God, Felicity
is free from illness or handicap without having to endure any harmful
treatments. This letter is for the purpose of informing all of the doctors involved
in Felicity’s health care in Michigan how they failed to contribute to an accurate
diagnosis. They only set us back in regards to time because of their
close-mindedness. Thankfully she has God on her side! He directed my path to
Cincinnati. He worked out schedules and guided the doctors, the nurses, and the
surgeons so that everything fell perfectly into place when we arrived. He made
sure Felicity’s health came first to everyone, not just to me, as was the case
in Michigan. HE answered our prayers and healed her! I give Him all the praise
and all the glory :) Here is our “roller-coaster” story - with a miraculous ending:
Felicity and I were in and out of Sparrow Hospital from January 5th to
January 17th (with a visit to U of M on the 14th). The
[mis]diagnosis always the same: "lymphadenopathy”. The first 15 pages of
this document are going to describe the negligence of many doctors which I had
to overcome to get Felicity correctly diagnosed and operated on. These doctors
include doctors from Michigan State University Pediatrics (Okemos Pediatric
Associates), Michigan State University Sub-Specialty Clinics at Sparrow
Professional Building, E.W. Sparrow Hospital, and University of Michigan C.S. Mott
Children’s Hospital.
January 5th,
Discovery of the mass and visit to MSU Pediatrics and Sparrow ER:
On January 5th, at about
noon, I was caking colloidal oatmeal on Felicity because she had bumpy,
sandpaper-like rash from head to toe that began on January 3rd. We
had been to Sparrow Emergency for it on the 4th, and Dr. Vanessa
Harkins prescribed a steroid as well as Benadryl, as needed. I filled the
prescriptions, but didn’t want her to be “out-of-it” on Benadryl, and have
always been leery concerning steroid use on my children, so I didn’t use either
of the medications. I decided to at least try a natural remedy first. Then the
moment I'll never forget, as I was patting a colloidal oatmeal mixture on her
neck, I felt a rubbery lump near her collar bone. I called her pediatrician and
told them what I discovered, but they said their first opening to be seen was
“tomorrow”. I tried to stay as calm as I could until the kids were home from
school so we could head straight to the Emergency Department. Something told me
it was going to be a long road, but I had no idea of just what I was going to
endure. I picked up the kids at 3:00 pm, and then called her pediatrician on
the way to the ER to see if any time slots had opened. They told me I could
bring her in, that there had been a cancelation. She saw Dr. Kenneth Stringer
at MSU Pediatrics. Right after glimpsing at her neck (no other examination was
done-not even a palpation of other lymph nodes) he said he was going to refer
Felicity to “Dr. Gera, a Hematologist”. I asked him what for and he replied “to
rule out lymphoma”. I felt like the walls were going to collapse on me.
Felicity had just seen him on December 29th for a well child check
up. I asked him if he noticed the bump then to which he sternly replied “It wasn’t there”. I told him I was going to proceed to take her
to the ED because they could to tests right away. His hostile reply was, “Do NOT take her to the emergency room,
this is NOT an emergency!” I took
her anyways, scheduling the appointment with Dr. Renuka Gera on the way. Dr.
Gera’s office was able to get her in on January 7th. Side note: in
looking back through pictures dating back to Thanksgiving time, especially bath time pictures, the lump can be
seen. Felicity was 86th percentile for weight at that time (she was
a very good eater!). In other words, you had to be looking for it to notice it,
which is why I did not. Dr. Stringer claimed it wasn’t there, but clearly that
was not true. It was undoubtedly there on Dec. 29th at the well baby
check up. A thorough doctor would have certainly discovered it at that time.
That evening, the children and I
spend the night in the Sparrow emergency room where she received a CBC blood
work-up. The CBC came back normal, only showing slight anemia which is a normal
occurrence for a two month old, an “expected” result, I was told. The emergency
department resident, Dr. Lee Murphy said that the results were not indicative
of cancer, and that we could relax about that. The kids and I could not have
been more relieved with this news, as we had been fearful of the worst all
afternoon, crying and praying - on an emotional rollercoaster. Then the
attending, Dr. Karlis Austrins made his appearance. He said that the blood test
results did not necessarily rule out anything, not really elaborating on his
statement. (Looking back, I know what he meant by that because blood tests only
indicate blood diseases and would not necessarily be affected by a malignant
tumor). Just like that, we were back in the same boat.
January 6th,
Saint Lawrence Campus Sparrow emergency room:
On January 6th, I prayed
and prayed, cried and prayed even more. I also did a lot of google-ing that
day…mostly educating myself about swollen lymph nodes. This did not help my
emotional state as I discovered the nickname for the supraclavicular lymph
nodes, “devil’s seat”. Apparently when these lymph nodes become swollen in
adults, it is a bad sign; most of the time an indicator of malignancy. Because
those particular lymph nodes drain for the abdomen, the thoracic duct, and the thorax,
the malignancy is usually located in one of these areas. I called Mount Hope’s
Gilead healing Center to see what they had to offer in terms of prayer for
healing. They didn’t really have much in the way of laying hands, only on the
first Saturday of the month, which had passed. The receptionist, however, said
one of the most memorable prayers with Elijah and I while we were in the
McDonalds parking lot. We prayed that if Felicity had a disease, that God would
heal her right then and there, and that Felicity would grow up professing how
“God did a miracle on me when I was a baby” and that she would be a living
testament of God’s awesome power to all.
The evening of January 6th, Felicity was so very
uncomfortable! The rash was spreading, hot to the touch, and weeping a buttery
colored discharge with an odor that reminded me of staphylococcus aureus
colonies from my biology labs at Lansing Community College. Three doctors had
already seen the lump at this point:
1) Dr. Kenneth Stringer (January 5th, MSU Pediatrics)
2) Dr. Lee Murphy (January 5th, Sparrow ED)
3) Dr. Karlis Austrins (January 5th, Sparrow ED)
No ultrasound had yet to be conducted, just a referral to
see Dr. Gera with Hematology/ Oncology: an appointment which was scheduled for
the following morning, January 7th. I was extremely anxious and I
decided that it seemed that something should have been done by now as it had
now been 24 hours since I discovered the lump (which seemed to have increased
in size) and the rash that had been going on since January 3rd was
now covering her head-to toe.
I took her into the Saint Lawrence
Campus Sparrow emergency room. There I was able to talk Dr. Kent Yaney into
beginning her on an antibiotic; he decided that amoxicillin would be
appropriate. I convinced him that I believed that the entire rash was staph. He
first replied to my antibiotic request, “if it was staph, it would feel
sandpapery.” This was after he had already examined her. Then he rubbed her
belly again and exclaimed “oh, wait, it is sandpapery!” He had no new ideas
about the mass, deciding that I would most likely just have to be patient and
wait to see what Dr. Gera thought in the morning. I pretty much knew that was
the answer I would get concerning the mass. I was mainly just there for the
rash, at the same time hoping I would meet a doctor who may have seen something
like this before. I was just thrilled to now be giving Felicity some medicine!
We were discharged and by the next morning, the rash had improved. Surprising!
A bacterial infection responded well to an antibiotic!!! But why treat a rash
systemically? Looking back, it seems like a topical ointment would have been a
more appropriate choice.
January 7th,
Appointment with Pediatric hematologist oncologist, Dr. Renuka Gera and 1st
Sparrow Hospital Admission:
I was up early the next morning in
great anticipation of our appointment with Dr. Gera. Felicity and I arrived
early for our 9:00 am appointment. First, an assessment was done by two
residents. Soon after, Dr. Gera entered the room with a couple other residents.
That made four students total in the room during the doctor’s evaluation. She
palpated the mass and noted the rash (which was particularly bad in the creases
of her skin including the neckline) was still quite angry at that point. She
pushed down on the mass and because this annoyed Felicity, decided that it hurt
her (which is an indication of swollen lymph nodes vs. tumor). Felicity was
probably more annoyed with the sensation of burning when the mass was pushed as
it was covered with [what was later confirmed to be] staph infection. She,
however, decided the lump was “infectious” and told her students this was the
case. I gave her a hug. She was, at that very moment, my favorite doctor ever.
How very off I was in my assessment
of her. She had us admitted across
the street to Sparrow Hospital. I walked Felicity over to the main hospital
through the skywalk, overjoyed that we had been cleared by the cancer doctor. I
found out a few weeks later through conversation with Mrs. Maureen Wessling,
the mother of a teenage friend of mine, that Dr. Gera was the Oncologist who 31
years ago had treated her daughter, Jennifer Sharp for Non-Hodgkin’s Lymphoma.
She is a veteran oncologist!
This is the very
first photo of the lump, which I took while in Dr. Gera’s office at the request
of my family (I was hesitant as I just wanted it to go away and be forever a
thing of the past!) Note the rash around her neck that Dr. Gera attributed the
mass to:
Now back to the hospital admission,
(January 7th/8th): the doctors decided that the rash “wept”
and spread to her neck and caused the sandpaper-like rash that was quite angry
now. They said that this was the root cause of the lymph nodes “flaring up”. I requested an ultrasound of the mass.
The ultrasound revealed a mass which the radiologist, Dr. Simone Arrington,
reported to be “prominent lymphadenopathy”. These were Dr. Arrington’s
findings:
“There is a hypoecholc
nodular mass in the left supraclavicular region with the appearance of nodal
conglomerate with hilar vascularity. The mass has an overall measurement of 4.4
x 2.5 x 3.0 cm.”
There
were no mentions of any other possible ways to ensure that the diagnosis was
accurate (such as a biopsy). Each and every doctor involved in Felicity’s
care at Sparrow Hospital had treated the ultrasound study like a know-all,
end-all. IN THEIR EYES, THAT WAS THAT! To recap, the diagnosis:
“lymphadenopathy”. She was prescribed an antifungal
cream for the rash which they had swabbed and tested positive for staphylococcus aureus. They said that
there could also be some fungal infection due to her cradle cap “seeping onto
her body”. This is very interesting because I later learned at Cincinnati
Children’s Hospital that any fungus which could
occur on the body would be a completely different organism than the one causing
cradle cap! Moreover, why wasn’t I given any antibiotic cream seeing as how we
KNEW for a fact there was a bacterial skin infection going on? This is very
relevant to the bigger issue because THEIR THEORY was that the lymph nodes were
swollen because of THE RASH! So what was done to tame the rash? Absolutely
nothing that made any medical sense. They were letting me treat a bacterial
skin infection systemically with amoxicillin vs. prescribing a topical
antibiotic! They did not inform me that antibiotic could help with the supposed
“swollen lymph nodes”, but if that was their thinking, amoxicillin was the
wrong choice anyways, as I later learned that augmentin is the “gold standard”
for swollen lymph nodes. I was told that the lymph nodes could take anywhere
from 4 to 6 weeks to decrease in size, that I’d just have to “wait it out”. We
were discharged on January 8th with instructions to continue the
oral amoxicillin and nystatin, and to follow up with her pediatrician in two
days. We went home that evening and Felicity and I, slept like we hadn’t all
year! The hospital trips were beginning to take their toll already.
January 9th
and 10th, Home Sweet Home:
On Friday, January 9th,
I didn’t know who to call anymore. Dr. Stringer had forever lost my respect.
Attempting to find a new pediatrician as well as researching swollen lymph
nodes and other remedies to treat them was the agenda for the day, between naps
and updating my family on Felicity’s health. I was beginning to wonder if
Felicity had in fact contracted the strep throat that we were so sure she had
evaded a few weeks back. Maybe that’s the
real infection to blame, I thought, a
hidden one. My mom helped me in my research and that’s how we spent Friday
and Saturday: researching, sleeping, and giving Felicity LOTS of love!
January 11th/12th,
Returned to Sparrow Hospital emergency room resulting in 2nd
hospital admission:
By Sunday January 11th,
I noticed the supposed “lymph nodes” were increasing rapidly in size and the
rash was once again “angry” as ever. I called the MSU Pediatric on call number
and spoke to Dr. Kimberly Mitcham, a pediatrician in the MSU Pediatrics clinic
who my other children had seen over the years, but Felicity had not met. I
texted pictures of the now-apricot sized lump to her. She had me watch some
videos via youtube.com regarding cystic hygromas, or fatty cysts. I was
ecstatic at what I was seeing: babies that had lumps that looked just like
Felicity’s! She said she was “90% sure” Felicity could have this because of the
location (cystic hygromas have a tendency to grow on the neck). I asked her if
she could access Felicity’s ultrasound study from her computer, but she could
not because it had not yet been attached to Felicity’s chart. She advised me to
return to the Sparrow emergency department because the rash was beginning to
return, even with the oral amoxicillin and topical nystatin therapy and she
“did not like anything oozing on a 2 month old”.
These are two of the images I sent to Dr. Mitcham via text on the night of January 11th:
I took Dr. Mitcham’s advice and we returned to Sparrow’s emergency department. Dr. Kristen Owen recommended a CT scan. This is the first time anyone had mentioned one! I was on the fence. I told her I was concerned about the radiation because Felicity’s paternal grandmother passed away from lung cancer, and paternal aunt just recently had a complete hysterectomy at only 32 years old due to cancer of the uterus. She said that an MRI would be more detailed and no radiation gets emitted, but she would not order an MRI because the mass was “extremely close to her airway”, and sedation was a requirement for a baby to get an MRI. (On January 20th, in Cincinnati, I found Dr. Owen’s assessment of the location to be wrong. Dr. Rashni Dasgupta, Felicity’s surgeon, said that it was “nowhere near” her airway. Dr. Dasgupta knew this to be true only by means of a clinical exam, and by then, the mass had about doubled in size from January 9th! Hence, Dr. Owen should have been able to know that an MRI was safe just by looking at it, as Dr. Dasgupta did.) That night, Sparrow admitted us to the children’s floor again. We were transferred upstairs as soon as a bed became available, about 14 hours after we arrived. So much time had passed, the quarter of the hospital we were in was now closed (nurse station and all), dark and freezing cold!
The first doctor I saw on the floor, the morning of January 12th,
was Dr. Samira Ali. She actually complimented me on fixing her skin so quickly
because “it was in much better shape” than the prior hospital admission on
January 7th. She said she “looked
like a new baby”. This comment was interesting to me for two reasons:
a) She had
discharged me with no other treatment besides for an antifungal cream (which
was only moisturizing and setting up an environment that allowed the staph
infection to thrive). In essence, the medication she had prescribed was working
against the oral antibiotic that I
had to practically beg Dr. Yaney for. Dr. Ali should have prescribed a topical ointment, such as bactroban, for
the skin infection. Nothing she had done contributed to Felicity’s improved
skin condition.
b) She “looked like a new baby”? Yet, she still had a huge mass on her neck
which was growing by the second! She did not look at all like a normal baby!!!
“CAN WE FIGURE OUT WHAT THIS IS FOR ONCE AND FOR ALL…AND FIX IT?” I politely
asked her. I trusted Sparrow Hospital yet
again, a decision which I later discovered to be a very dangerous one. I say
this because I later learned at Cincinnati Children’s Hospital Medical Center that
the tumor was now compressing her jugular vein, protruding under her collar
bone near vital structures and compromising her brachial plexus. The
misdiagnosis’ in Michigan were allowing the tumor more time to grow and making
the eventual surgery riskier than it needed to be.
They preformed another ultrasound
to measure the even more “swollen lymph nodes”. I asked the resident doctor if
they thought a CT scan would help them in diagnosis. She said, “no…it would
definitely be unnecessary radiation”. I was actually proud of myself for making
a choice the night before down in the ER that was in line with Dr. Ali’s
thinking! I felt that I saved Felicity from receiving unnecessary radiation. In
reading through Sparrow Hospital records, I had been criticized for this
decision the night before in the ED! I only wanted their advice! I would have listened had someone said it
would help obtain an accurate diagnosis, but they made it sound like it would
do no good at all! I had read that luminescence was used as a diagnostic
tool in diagnosing cystic hygromas. Shining a bright light through the mass in
a dark room would reveal a cystic hygroma because they are “brilliantly
translucent”. For example, when you were a child and shined a flashlight in your
mouth, your cheeks are also “brilliantly translucent” because they allow [red]
light to be visible on the other side. I asked Dr. Ali if we could try this.
She chuckled, saying “we have much better things to use, such as ultrasound”.
She shot my idea down quickly and I believed her that “this is really something
done in places where they lack better technology”. I later found this to be
false when reviewing the articles I got the info from as they were in fact from
the United States.
Felicity’s doctors at Sparrow Hospital
were so close-minded, that because the ultrasound revealed a “prominent lymph
node conglomerate” which appeared to be swollen lymph nodes,
they closed the case several times, never taking additional steps to MAKE SURE that’s what it was, even when
the mass was visibly rapidly increasing size! Dr. Arrington
wrote yet another report which left no
room for possibilities other than “prominent lymphadenopathy”. These were
her findings:
“There are again
multiple enlarged lymph nodes forming a conglomerate in the left supraclavicular
region measuring 4.4 x 2.8 x 3.2 cm in greatest dimension. The individual lymph
nodes have hilar blood flow. Their individual measurements are somewhat
difficult to isolate but there appear to be at least four discrete lymph nodes
with the following measurements from largest to smallest: Inferiorly 3.2 x 1.9
x 1.7 cm, Mid 2.1 x 1.6 x 2 cm,
Superior 2.1 x 1.3 x 2 cm, Most Inferior 1.4 x 0.7 x 0.9 cm. These are
unchanged when compared to the prior examination. Impression: No interval
change in the prominent lymph node conglomerate in the left supraclavicular
region measuring 4.4 cm in greatest dimension.”
I still wonder where she was obtaining these individual
measurements as there was only ONE TUMOR, NOT FOUR! And we now know, of course,
that Felicity’s lymph nodes were healthy and normal sized, with a tumor growing
up above them. The summation of all of the close mindedness was leading us down
a very frustrating path, one which headed in the opposite direction of a correct
diagnosis and resolution.
Dr. Ali changed Felicity’s
antibiotic to clindamycin which broke her out in a new type of netty-like rash
all over her cheeks. I was not happy about that because I had just cleared her
cheeks up 3 days ago with Amoxicillin! Why ruin a good thing? They were only
undoing my progress! I communicated with Dr. Kimberly Mitcham via text
frequently during that hospital visit so she could direct these doctors in the
“proper” testing to rule out (or in) her idea of cystic hygroma or other
lymphatic malformations that she had hypothesized about two nights before. She
did communicate with the radiologist, Dr. Arrington, who assured her that the mass was swollen lymph nodes, and not
cyst-like at all. Augmentin, Dr. Mitcham said, was the “gold standard” when it
came to swollen lymph nodes, and so I asked the residents if we could try that
instead of the clindamycin that she was obviously having a bad reaction to.
(Augmentin is amoxicillin with an additional antibiotic, clavulanate, to help
kill off any resistant bacteria). Why they had not tried ANY augmentin on the 7th
is still a mystery to me. If it is in fact the “gold standard”, why use
anything sub-standard when there was a mass on my daughter’s neck that was
growing by the day?!
Pediatric ear,
nose and throat surgeon, Dr. Stanley Dudek, came in to our room examine the
mass. He decided that “swollen lymph
nodes” was in fact, an accurate diagnosis and that I could follow up with
Mid-Michigan ENT upon discharge. (Come to find out, from a chatty nurse, Dr.
Dudek was feeling very used by Sparrow Health Systems. He was bring let go
after “training a bunch of newcomers”…the
last day of his career at Sparrow was only a week away). He told me a story of
a girl who he had seen at St. Lawrence “before my time”. He said that the
little girl, about 3 years old, presented with a mass on her neck even larger
that Felicity’s. He attempted to drain it, but nothing came out. He said what
the little girl had, were swollen lymph nodes and that it took a few months for
them to go down. He said the augmentin should help, but don’t be surprised if
it takes a while to see improvement. In reviewing the records from Sparrow
Hospital, I found that Dr. Dudek, unbeknownst to me, actually consulted with
Pediatric hematologist oncologist, Dr. Scott, who I never met and never laid
eyes on Felicity. From the information he was provided by Dr. Dudek, Dr. Scott
also suggested that “presentation is most
likely infectious in nature and to continue antibiotic treatment”. So there
we were, in the same boat again! The wrong boat again!!!
Photos taken during the second hospital admission on January 12th.
She was her normal, happy, healthy self. She didn’t seem at all sick, no fever.
So why the “swollen lymph nodes”?:
We were discharged the afternoon of January 12th, but not before another, short-lived diagnosis was made! Dr. Abdul Abdi, when printing off the discharge papers along with the prescription for augmentin, noticed results had just been posted from a viral panel which had been ordered by Dr. Stringer on the January 5th, after I discovered the mass. Felicity was apparently positive for cytomegalovirus, or CMV! “This explains everything”, he proclaimed, “the swollen lymph nodes, and even the rash!” Now something told me this was too good to be true from the very moment he said it. As my mother and I researched CMV for the next 30 minutes, we did not like what we were reading at all! I requested a copy of the viral panel. A nurse brought it into me and stood there as I read it. I pointed out that Felicity was negative for IgM antibodies! She only had antibodies that reflected protection against CMV, not the antibodies which would indicate a past or current infection. It appeared to me that Felicity had the antibodies I passed onto her through my breast milk. Hence, the exact reason I breastfeed…to give her protection! Even though I never knew I had been exposed to CMV, I knew I had mononucleosis as a teenager. Felicity’s mononucleosis viral test read the same as the CMV did: positive for IgG, negative for IgM. This, to me confirmed my suspicion. She agreed and said I should bring that up to Dr. Abdi saying “I think you’re right”. Dr. Abdi came in a few minutes later, saying “I just had a meeting with my colleagues and think I may have rushed into that diagnosis”. Hence, Dr. Abdi’s diagnosis wasn’t good or true, yet I was still provided with a packet of information concerning cytomegalovirus that they just admitted she DIDN’T HAVE upon discharge! We were also discharged with augmentin as was planned prior to the funny misdiagnosis. A misdiagnosis that survived as long as I wish the other misdiagnosis, “lymphadenopathy” would have.
January 14th,
University of Michigan, C.S. Mott Children’s Hospital emergency department:
By 2:00 pm on January 14th,
Felicity had already received 8 doses of augmentin. The mass was visibly
growing all the while. I had been taking pictures as a means to keep track of
the growth rate. I called Okemos
Pediatrics and spoke to Allane Wieber, the nurse I had communicated with two
days prior to get some tips on soothing the abdominal discomfort from the
augmentin (it was initially very hard on Felicity’s tummy and gave her
diarrhea). I was so upset at the size of
the mass! Allane told me to give it another day to work, that antibiotics
sometimes needed 72 hours to fully take effect. Her statement struck me as
being untrue because of the experience I just had with the rash. When Felicity
started the amoxicillin for her rash on January 6th, it had
drastically improved by the very next morning! Now she was on an even stronger
antibiotic, so why would it be taking longer to work on the lymph nodes than
its weaker cousin did on the rash? I told her I was going to take Felicity to
University of Michigan children’s emergency department as soon as my other
three children were home from school. After picking up my children from school,
we headed to Ann Arbor. Felicity became hungry as we were passing the Howell Exit,
so I exited to nurse her. As I was nursing the baby, I received a call from
Allaine. She read me a statement that Dr. Meghan Arnold, a Sparrow/U of M
pediatric surgeon, had just made, verbatim:
“
Dr Mitcham spoke with Peds Surgery, and per Peds surgery, Dr Arnold herself
reviewed the films, she believes that Dr Dudak is more than capable and
experienced to deal with this but on average an enlarged node takes 4-6 weeks
before the lymph node will shrink to the size that it is safe to surgically
intervene. She is currently recommending pt follow up with Dr Dudek and see
back in 1 week vs 2 week follow up and states that IF she goes to U of M which
she can do whatever she would like, she would recommend mother NOT refuse IV
antibiotics this time but thinks outpt augmentin is the right choice, she
states the lymph node if biopsied right now would come back non specific as
hyperactive lymph node response and it is dangerous at this size given
surrounding structure and inflammation. She stated that they can see her but
she is currently connected with excellent providers and would defer care to Dr
Dudek (ENT). Will call mom.
.....Electronically
signed by Allane Wieber RN January 14, 2015 2:47 PM”
I would like to analyze this paragraph piece by piece:
“Dr Mitcham spoke with
Peds Surgery, and per Peds surgery, Dr Arnold herself reviewed the films…”
Neither Dr. Mitcham nor Dr. Arnold had ever met Felicity
face to face at the time, and either of them ever has to this day. Dr Arnold
made all of those recommendations without ever laying eyes on Felicity!
“…she believes that Dr
Dudak is more than capable and experienced to deal with this”
Dr. Dudek, as I previously mentioned, was being let go by
Sparrow…the last day of his career at Sparrow Hospital was only a week away.
His wife and he were debating whether or not they would then open a burrito
stand (he apparently made very yummy burritos). Let’s suppose he had not been
terminated though: Dr. Dudek had never seen patients on an outpatient basis,
only patients who were currently in admitted the hospital. I knew this because
I had already attempted to make an appointment with him the day after I met him
and his receptionist gave me that information. Dr. Arnold must not have been
aware of that when putting forth her “recommendations” for Felicity.
“…but on average an
enlarged node takes 4-6 weeks before the lymph node will shrink to the size
that it is safe to surgically intervene.”
If the lymph nodes “shrunk” back down to size, why would
there be any reason to “surgically intervene” at that point? Also, had I waited
4-6 weeks, the tumor could have invaded Felicity’s brachial plexus and jugular
vein! Her plan was far from “safe”,
it was actually very dangerous!
“…IF she goes to U of
M which she can do whatever she would like, she would recommend mother NOT
refuse IV antibiotics this time but thinks outpt augmentin is the right
choice…”
If she thought out patient augmentin was the right choice,
then why should I agree to IV antibiotics? The only reason Felicity had not had
any yet is because the residents at Sparrow left the choice up to me. They said
that there was no f urther benefit from IV vs. oral. My OB said the same thing
when I had a skin infection after my tubal ligation, so I believed them (having
heard the same think relating to two different situations). I decided it was
rather unnecessary to have an open port exposing Felicity to hospital germs if
it wasn’t benefiting her any. Had someone told me that they would have helped
more so than oral, I would never have declined them! This statement just seems
very unclear to me…which did she really think was the right choice: IV
antibiotic or outpatient augmentin??? I felt like screaming “Come on people,
you tell me the best thing to do and quit playing around with my daughter’s
health. You went to medical school, not me!!!”
” …she states the
lymph node if biopsied right now would come back non specific as hyperactive
lymph node response and it is dangerous at this size given surrounding
structure and inflammation”
So now Dr. Arnold is psychic and KNOWS the results of some
biopsy she is totally against? Is that why she was against it, she would rather
rely on her psychic powers? This is the “safer” way to practice health care, doctor?
By the way: THIS IS THE FIRST TIME THE WORD “BIOPSY” HAD BEEN MENTIONED TO ME!
AND NO, DR. ARNOLD, THE BIOPSY WOULD HAVE COME BACK THAT IT WAS A TUMOR WHICH HAD NOTHING TO WITH HER LYMPH NODES---THEY WERE
PERFECTLY FINE! THE TUMOR WAS NOT EVEN TOUCHING THE LYMPH NODES! IT WAS
ALSO COMPLETELY SAFE TO BIOPSY, BUT
SHE WOULDN’T HAVE KNOWN THAT BECAUSE SHE NEVER EXAMINED FELICITY!!!
After hearing Nurse Allane read the
statement, I told her I was absolutely
proceeding to go to U of M! I told
her, in a nutshell, the replies I just wrote. She said that I was wasting my
time going to Ann Arbor because Dr. Arnold worked with the surgeons at U of M
(she is a U of M surgeon who commutes between U of M and Sparrow) and her
opinion would basically follow me there! She really did NOT want me to go and
seek a second opinion! It was actually very strange to me just how stuck they were trying to make me
feel! Side note: I did, in fact, call Mid-Michigan ENT to schedule a follow up
appointment with an ENT specialist the day before, January 13th.
This was after Dr. Dudek’s office told me he could not see Felicity. The Mid-Michigan
ENT receptionist said the first available appointment was in mid-February, a
month out! I begged her for a sooner appointment, describing Felicity’s
situation. She then managed to find a sooner appointment, set for January 21st
at 3:40 pm. In reading through the notes written by MSU Pediatrics, they were
actually making it sound like I was not following their advice, when in all
actuality their “advice”, what little
of it there was, was impossible to
follow because it only lead me down dead end roads (i.e. Dr. Dudek)! The very
first time they requested for me to bring Felicity in to see Dr. Mitcham face
to face was on January 17th, and that was after they learned that I
was going to Cincinnati Children’s Hospital Medical Center (as if just for the
sake of covering their you-know-what’s).
Now back to January 14th,
when we got to U of M, I felt a sense of relief come over me. I was actually
smiling in my name badge photo. “We are
finally in the right place”, I thought to myself. The nursing staff was all
very professional. They were so nice to the other children, offering snacks and
even stuffed animals and toy cars to take home! The facility was very high
tech. I debated on the highway whether I would start fresh with U of M as if they were the first to address the
situation, or tell them the complete history thus far. I still wonder if things
would have been different with them
had I not decided on the former. They retrieved all of the records from
Sparrow. My mom had me request an MRI; she had been deep into her at home
research. However, Dr. Jeffery Murphy responded that there had to be a reason
for ordering tests and they couldn’t just go putting through exams with no
explanation as to why. They did conduct their own ultrasound, which Felicity
slept right through (making for a great quality ultrasound). The tech was ready
to wrap up the test without utilizing the function which showed blood flow. I
requested her to record blood flow so the radiologist could be equipped with
all of the tools for an accurate diagnosis. (Cystic hygromas do not have much
blood flowing through them). I was excited about the fact that there would be a
different radiologist reading this one. Unfortunately, he was also tricked by
the tumor. “Lymphadenopathy” was the diagnosis, yet again. The discharge paper
stated, verbatim:
“Felicity was seen in
the Mott ED for an area of swelling around the left side of her neck.
Ultrasound showed that the area contains two swollen lymph nodes. There is no evidence of a tumor in the area,
or a drainable abscess. Her labs from Sparrow Hospital were also reviewed
during the visit. Her nodes are probably swollen because they are draining a
resolving infection from her head or neck. She should follow up with her
primary pediatrician in 3-4 days to insure she is healing well.” Felicity
had been evaluated by two doctors, resident Dr. Jeffery Murphy and attending
Dr. Nicole Sue Sroufe.
On the ride home I felt emotionally
drained. I was not at all reassured by U of M’s findings. I felt even further
from resolution that I had been before. WHY WERE THE LYMPH NODES BECOMING SO
SWOLLEN? I DID’T EVEN KNOW LYMPH NODES COULD GET THAT BIG! “THEY” WERE NOW THE
SIZE OF TWO APRICOTS! Felicity was
still her happy self and her skin looked great. It didn’t seem right at all,
not even a little bit. I felt like a mouse stuck in a maze.
The children and I prayed like
crazy on January 15th! My Grandma Sugar had now placed her on
televised, national prayer chains such as SonLife Broadcasting and 700 Club.
My mom asked her prayerful friends to pray and add her to the prayer lists at
their churches. I called a few local churches and asked them to add Felicity to
their prayer lists. We all prayed that the lump would shrink down to nothing.
This is not how God decided to handle
the matter, though. He handled it His way.
Home from U of M. Her
name fitting her just as always as Felicity in fact means “happiness” in Latin:
BUT NECK MASS STILL GROWING:
January 16th,
Sparrow Hospital emergency room:
I took Felicity back to Sparrow
Emergency Department in the early morning on the 16th. Her skin was
almost completely cleared up. The she had been holding down the majority of the
augmentin in each dose for over four days now (not to mention the amoxicillin
regimen she started on the 6th prior to being switched to augmentin
on the 12th). YET, THE MASS WAS HUGE! Dr. Yaney and I crossed paths
as the nurse was escorting Felicity and I to our room. I told him “the lump is
still getting bigger, even with augmentin” to which he replied “nobody’s cut
into that thing yet?” I shook my head. Unfortunately Dr. Yaney did not see
Felicity that evening. She saw Dr. David Betten, insead. I decided that I would
turn down nothing at this point, even if it didn’t make 100% sense to me. They offered IV antibiotics, rocephin, and
since Felicity would spit up a little bit of augmentin about every other dose,
I agreed. I requested a CT scan to which
they obliged. However, looking through the notes for that visit, Dr. Betten
discussed the case with “Peds Senior” (it does not specify who that was). The
“Peds Senior” told him that “CT scan would not be beneficial most likely
lymphadenopathy”. Well am I ever glad that I did go through with it anyways!
The CT scan was read by an “online radiologist” first. This is the report the
online radiologist made at 6:42 am:
“Large relatively
low/intermediate density mass within the left side of neck, as above (4.7 x 4.0
x 2.8 cm) 50 hounsfield unit mass involving the left side of the neck centered
laterally to the carotid space, deep and posterior to the sternocleidomastoid
muscle. This extends from roughly the level of C2, inferiorly to just below and
posterior to the scapular. The airway patent. Normal prominent thymus is noted.
A lymphatic malformation is felt to be
most likely. An abscess or other nonspecific mass is not excluded.”
I was overjoyed that it was actually stating the possibility
for lymphatic malformation! I had been researching lymphatic malformations for
the past few days, especially this evening and while waiting for the CT scan
report! To hear this news was a breakthrough in my eyes! Dr. Betten told me
that Dr. Dudek would be in at 8:30 am and would be reviewing the CT scan with
the Pediatric team upstairs. I was eager to hear what they would say. In the
meantime, I was already getting in touch with Cincinnati Children’s Hospital
Medical Center who I had discovered due to their extensive online information
regarding Lymphatic Malformations. I discovered that CCHMC has one of eight
Hemangiomia and Lymphatic Malformation clinics in the US and that theirs was
actually the closest one to Michigan. I was getting the ball rolling with
Cincinnati the minute they opened the clinic’s phone lines at 8:00 am.
Meanwhile at Sparrow, Dr. Betten’s shift was over, so Dr. Lisa Cole was the one
to inform me of the Pediatric team and Dr. Dudek’s take on the CT scan: “the
pediatric team and Dr. Dudek feel that it is swollen lymph nodes and the online
radiologist’s report was flawed because he did not know Felicity’s history.”
This was Simone Arrington’s report of the CT scan at 8:28 am:
“There is again demonstration of the left supraclavicular lymph node
conglomerate. There is a loss of the detailed internal structure on CT
imaging with a more cystic appearance on today’s exam. Overall, this mass
measures approximately 4.6 x 4.2 x 4.2 cm in greatest AP, transverse and
cranlocaudal dimension with mild extent below the left clavicle as well. There
had been reported history of treatment with antibiotics which is likely the
cause of the more cystic appearance on today’s study. Though measurements are
slightly increased as compared to the prior ultrasound, however, allowing for
differences in technique, the mass is overall stable.”
Dr. Cole did not, of course, read me the report verbatim. I
obtained it from hospital records. I told Dr. Cole that I trusted the online
radiologist’s report more that anyone of the other doctor’s opinions and I
would be following up at Cincinnati Children’s Hospital. By that time, I had
already emailed several pictures of Felicity’s neck to a nurse at the Hemangeomia
and Lymphatic Malformation Clinic at Cincinnati Children’s. NOW WE WERE ON THE
ROAD TO DIAGNOSIS AND RECOVERY!!! YAY!!! We were discharged with instructions
from Dr. Dudek to follow up with U of M ENT and continue the antibiotics. The
discharge nurse said “this is just a technicality, It looks like you have a
good plan in place” J
Yes, I did. Free at last, free at last, Thank God Almighty, we were free at
last!!!!!!!
January 16th,
Home:
I informed MSU Pediatric Associates
of the new plan to take Felicity to Cincinnati Children’s Hospital. Nurse
Allane Weiber attempted to discourage me from going almost as soon as I
mentioned the idea saying “that’s gonna get expensive girlfriend”. I told her I
did not care how much money it would cost…”this is my child!” She told me that
I was being “non-compliant” and that “Dr. Mitcham needed to see Felicity”. My
jaw almost hit the floor!!! “Non-compliant”? COMPLIANT WITH WHAT??? I had been given no advice other than to
follow up with Mid-Michigan ENT, an appointment that, as previously mentioned,
I was able to get scheduled for January 21st with a little begging.
I had been communicating with Dr. Mitcham over the past week and she had never
requested to see Felicity. Most of the time, Felicity was in front of some
Sparrow or U of M doctor or another which is why I did not think twice about
it. But now, all of the sudden and only when they learned of my plans to travel
to Cincinnati Children’s, they were demanding to see her??? I hung up on Allane,
and called my mother to vent regarding the conversation that just took place
and knowing everything that had been happening, she was just as shocked as I
was. The following are the notes that were written by Nurse Allane:
“Called
mom Fonda to encourage appropriate follow up, told mom “it is important for
Felicity to be seen in f/u face-to-face in clinic to discuss all results,
provider complete physical assessment and create plan directly with mom. Care
manager will attend, if acceptable to Mom.” Mom stated that she prefers taking
Felicity to Children’s Hospital in Cincinati, as they specialize n
malformation/cystic hydroma’s and she believes that is what Felicity has. Mom
stated that Dr Dudek cannot see Felicity, she states that he got fired and is
done in 2 weeks. Felicity was in Sparrow ER yesterday, she did get IV
antibiotics and was sent home on oral Augmentin again. Mom stated that the
ultrasound done in Ann Arbor stated that the lymph node conglomerate was
growing some. Mom states that there is a specialist in Cinncinati Children’s
Hospital that deals with malformation/ cystic hydromas, she believes it is a cystic
hydroma, malformed lymph nodes. Mom stated that she is got one IV antibiotic
dose last night for the infection in this lymph node, she was sent home on oral
Augmentin again, she is spitting it up, about 10-15 minutes after she takes it,
so mom thinks she may be absorbing some but definitely not all of it. Mom
denies any fever, the lymph node continues to grow, mom states there is a rash
over the node, it is not as red and angry as it was. It appears that she had 2
things happening, she has a malformation and an infection, so I recommend that
this infection continued to be treated, and she is not keeping her antibiotic
down, this is a concern. Mom stated that she intends to take her to Cincnati to
continue treatment for this. Explained that she may not be seen in Cincinati
for a few days, the infection needs to be treated now, mom stated that she will
keep her eye on the node and her temp and if node worsens or temp goes up, she
will address this then. Will defer this request to Dr Stringer to address. We
will fax the ultrasound done at Sparrow to the fax number provided by mom for
Cincinati. Mom is aware she is waiting for a call from Cincinati Children’s
Hospital to schedule an appointment.
.....Electronically
signed by Allane Wieber RN January 16, 2015 11:403 AM”
I never stated that Felicity was throwing up each dose of
the augmentin. I only told her that I agreed to IV antibiotics in the ER
because sometimes she would spit up what I estimated to be 25% or less of the
dose. Allane made many questionable recommendations and statements in this
paragraph. Dr. Mitcham was the Pediatrician who was actually “addressed” and
this is what she noted shortly after:
“spoke directly with pediatric surgeon Dr
Arnold who states she reviewed the Ultrasound herself and there is NOTHING to
suggest on scan a cystic hygroma and that has been ruled out – she stated
Ultrasound showed all evidence of lymph nodes and a cystic hygroma appears very
different on Ultrasound and that is NOT what Felicity has. The current management of lymph nodes when inflamed takes about 2-4
weeks to shrink and resolve and I do not recommend she go to Cincinnatis as
this is NOT a cystic hygroma after discussion with ENT, and Peds Surgery Dr
Arnold. I think it will be a waste of mom’s time – at this time she needs to
wait to have the lymph node improve on the appropriate antibiotic therapy
Electronically signed by Kimberly Amila Mitcham DO on 1/16/15 at 11:56
AM”
OUT OF THE NIGHT AND
INTO THE DAY:
By the
end of the day on January 16th, I was able to secure an appointment
at Cincinnati Children’s Hospital’s Hemangioma and Vascular Malformation Clinic
for January 20th! I was absolutely ecstatic that we were now TRULY headed in the right direction. I
did not know what the lump was, but I did know that following the advice of
Sparrow Hospital and MSU Okemos Pediatric Associates did not feel like the
right decision anymore. I trusted them for too long at this point…they had
their chance to fix my daughter, and failed miserably. My mother came up from
North Carolina to accompany Felicity and I to Cincinnati. That weekend was one
of the slowest to go by in my entire life, but soon we were on our way.
The nurse at the
Hemangeoma and Lymphatic Malformation Clinic requested photos right away. These
were taken on January 16th. The rapid rate of growth is evident when
compared to past photos:
We left for Cincinnati on Monday,
January 19th. Upon arrival at Cincinnati Children’s, I felt an
enormous sense of Peace. This is where
God wants us to be, I thought. The Hemagioma and Vascular Malformation
Clinic is located within the Cancer and Blood Disease Institute. When I first
saw this, I cried a little, but then pulled myself together. I remember
thinking, It’s in God’s hand and I’m not
taking it back from him. After registration, we were escorted to a room
where Felicity would meet her soon-to-be surgeons, Dr. Rashni Dasgupta and Dr.
Ann Schwentker as well as two other surgeons, the attending Cancer and Blood
Disease Doctors, Dr. Adams and Dr. Hammill, and Dermatologists, Neurologists,
Geneticists, and Orthopedics (due to Felicity’s polysyndactyly right big toe).
She was also evaluated by a ENT Surgeon, Dr. Myer, who decided Felicity’s case was
NOT his area right away (so, Dr. Stanley Dudek was NOT best suited for Felicity
in the first place and Mid-Michigan ENT would have been even more wasted time).
Two expert surgeons: Dr. Dasgupta, a general surgeon and Dr. Schwentker, a
plastic surgeon, would be the ones to handle Felicity’s upcoming surgeries. THEY
ANTICIPATED A REQUIREMENT FOR SURGERY, AT THE VERY LEAST, A BIOPSY WITHIN THE
FIRST 30 MINUTES OF THE VISIT. They reviewed the studies I brought with me on
disk from Sparrow Hospital. These were the two ultrasounds (January 7th
and 12th) and CT scan (January 16th). The CT scan
conducted at Sparrow was such low quality, per Dr. Dasgupta, that she told me
Felicity would definitely need another one done. The person who did the CT scan
at Sparrow apparently took large spliced images as if she was an adult. Felicity
was given another Ultrasound right away. The radiologist came in and conducted
it his self. He told me right then and there, that while the mass did, in fact
look like lymph nodes, there were many other things SUCH AS VARIOUS TUMORS that
appear the same as lymph nodes on ultrasound and that the only way to really
know for sure was to biopsy the mass. He said he would call Dr. Arnold and
inform her that he agreed that a biopsy was the best course of action. At
around 4:00 pm, Felicity was discharged with a date to come back for a biopsy.
They offered me the option to stay and put her on a waiting list for a same day
biopsy. This is very difficult situation for babies as they cannot eat during
the waiting period, which can last for 12 hours, and even then can ultimately
not get called. I decided to go the scheduled route to make it less stressful
for her. Dr. Dasgupta agreed that that was the better decision for Felicity, so
I was comfortable going home. We went home for a few days and then came back to
Cincinnati on January 26th for the biopsy.
Unbeknownst to me, on this very day
(January 19th) back in Michigan some letters were being written to
me, four to be exact. Michigan State University, Okemos Pediatric Associates
sent me four separate letters dismissing each one of my four children,
including Felicity, from the practice. The letters were sent via certified
mail, so I had to go to the Okemos post office to pick them up which I did on
January 24th when I received the notice. Coincidentally, Dr. Mitcham
called me within one minute of my opening the disturbing correspondence, to
check on Felicity. I told her what I had just received and read her the reason
for this “decision” which stated “We
believe that we can no longer meet your treatment expectations for your
children.” It also stated that I was verbally hostile to Nurse Allane,
referring to a conversation on the 16th. During this conversation, Allane
told me that Felicity’s ultrasounds and records from Sparrow had been obtained
and were in her chart as I requested the day before (so as to have all the
records together and organized). When I asked her to read me an ultrasound
report, though, she admitted she did not have it “yet”. I got pretty upset
because she outright lied to me about my daughter’s health records! I’ll admit
I was already an emotional mess…her lie was the straw that broke the camel’s
back. I called her a liar and hung up on her; probably was not very nice but
being lied to is very disrespectful and not what I call positive communication.
We had been going to the practice for 11 years now! Elijah (now 13 years old)
since 3 years old, Gabriel (now 11 years old) since birth, and Zilah (now 7
years old) since birth, and I had never had any problems with anyone before. The
letter stated that the two appointments that were currently scheduled for my
family, Zilah’s 7 year physical and Felicity’s 4 month check up, were now
canceled. Dr. Mitcham said that she would talk to her colleagues and try to get
the decision reversed. She was successful in her efforts, I discovered, when some
other nurses contacted me attempting to assist with follow up care for
Felicity. However, I chose not to bring any of my children back to the practice.
Dr. Mitcham, the doctor who had been listed as Felicity’s primary care doctor
since January 12th, has not met Felicity in person to this day, and
she now has a new PCP, Dr. Eleanor Watson.
On January 29th, one of the worse days of my life, I received the biopsy results from Dr. Dasgupta. “How is Felicity today?” I knew something was wrong from the tone of her voice. “It’s not what we were hoping for”, she explained. My heart sunk. The biopsy revealed, what they thought was one of two cancers: Primitive Myxoid Mesenchymal Tumor of Infancy or Infantile Fibrosarcoma. They were leaning toward the former, PMMTI, which is an aggressive, non-chemo sensitive cancer which only 10 people in the world had ever been diagnosed with. Because PMMTI is so rare, they sent it off to the top two expert soft tissue tumor pathologists in the United States for final diagnosis: Dr. Colleen Coffin in Salt Lake City, and Dr. Chris Fletcher in Boston. “It will be a long, bumpy road, but she’ll get through it and with our help, she’ll go on to have a healthy, normal life”, Dr. Dasgupta encouraged. Felicity’s oncologist, Dr. Brian Turpin, would later explain the “long, bumpy road” to me in detail: chemotherapy was what she was referring to that night.
Thank God, my mom was with me that
evening. I felt like the walls were closing in on me again, like in Dr.
Stringer’s office on January 5th, only this time much faster. It was
hard to breathe. I went outside and walked around the house several times in an
attempt to free my mind from the shrinking space. I finally fell to the ground,
crouching under the Christmas tree I had drug outside a few weeks ago. I
remembered Christmas Eve, and my attempts at a family photo shoot. Felicity had
spit up the most she ever had within minutes of my putting her beautiful
Christmas dress on her. After cleaning her up, I did get some beautiful
pictures. I began to ball. I heard little footsteps and calmed myself down knowing
it was my sweet Zilah. She hugged me saying “It’s gonna be okay, mom,
Felicity’s gonna be okay. God will help her”. I went back inside the house and
snuggled with Felicity. Trying to push the horrible thoughts out of my mind and
keep them out was proving to be very difficult. My brother called and I broke
down again when telling him. I remember describing to him feeling like the
little boy in “Artificial Intelligence”, a Steven Spielberg film. The boy only
gets to spend 24 more hours with his mom, but she doesn’t know it, only he
does. I was a mess. I didn’t know how much more I could take. Thank God for
free will. I chose victory for Felicity instead of defeat. I used the power of
the Holy Spirit to rise up and fight on her behalf.
My Grandma
Sugar was the first one to reject either of the diagnosis. My mother and I
followed suit soon after delving into the less than promising things we were
reading in researching the two diseases. Words like “5 year survival rates”
were not words that describe the future of a daughter of the One True God. I
did not want either of the diseases for Felicity and knew this was not the plan
God had in store for His child either. My mother’s foster sister, Leeann, wrote
us her own faith building testimonies of miracles she had experienced as well
as some very strong prayers that we utilized right away. My grandmother called
SonLife Broadcasting Network and 700 Club and had her name added to the prayer
lists that they read over the air. We placed her on multiple prayer chains
around the country and firmly believed that she did not have cancer and God
would heal her from whatever it was. I asked God to wither up the tumor at the
roots and in the Holy Name of Jesus Christ she was healed by his stripes
(Isaiah 53:5). I began praising God for what he had done for Felicity, claiming
she had already received a miracle. I cursed the tumor several times each day; it
was not a part of her and I hated it. I knew in my heart God had answered our
prayers.
On February 4th, we were
back at Cincinnati Children’s Hospital. Felicity received MRI, CT, and PET
scans. She was admitted in the hospital two days prior to the studies because I
was concerned that the mass was growing so large that it was compromising her
airway. Thankfully, it was not. The MRI revealed that Felicity’s left jugular
vein was being compressed by the tumor. It was a little more than half of the
circumference of the right jugular. Her brachial plexus was also being
compressed. The doctors were confident that the jugular had not been invaded, but couldn’t be sure about the
brachial plexus because nerves do not show up very well in MRI or CT scans. What
they were sure of is this: a) the PET scan revealed NO METASTIZISATION---this
was the one and ONLY tumor!!! J
b) The surgeons could not get good
margins due to the proximity to the jugular. This meant that discovering the
type of tumor it was prior to surgery would be essential determine how aggressive
they surgeons would need to be in the excision to avoid possible reoccurrence. c)
They could see that the tumor was one single mass with a single finger-like
protrusion that extended beneath the clavicle. It was almost like a side-note;
not very concerning, but I was told they would have to break it. They also laid
out to me the tentative surgery plan, the details of which I struggled with. They
wanted to implant a PIC line on Felicity’s right
side of her neck (so, another incision) which would extend out of her body
through her nostril, for administering chemo drugs. Why, I asked myself, would
I allow the doctors to proceed with the PIC line and follow a plan for
chemotherapy since I know Felicity has been healed? Three months of chemotherapy
would be hard on her, no matter how
much Dr. Turpin tried to make me feel better about it by saying things like
“this particular regimen is very well tolerated by babies”, and “she won’t be
vomiting all the time or lose too much weight”. She would have felt awful
though! She would have also lost what little hair she had already grown. In
researching the treatment, I discovered that this because chemotherapy drugs
aim to destroy rapidly dividing cancer cells and because hair follicle cells
also divide rapidly, they are not exempt. I decided to trust God by trusting the
doctors He led us to and follow through with their recommendations. We were discharged on February 5th,
and told they would be calling by the end of the week with a surgery date. When
I received the call I was given only a tentative date, which did end up ultimately being the actual one.
We would be back for the big surgery on February 18th, much further
away that I had hoped for.
Felicity, my daughter
Zilah and I during the Cincinnati Children’s Hospital stay the first week of
February:
Felicity back from
MRI, CT and PET scans, February 4th. Even though the anesthesia
really upset her tummy, she tried so hard to be happy :(
I was given a National Children’s Cancer Society application for financial assistance to fill out by the social worker on the cancer floor. I read over the qualifications which stated that one must be diagnosed with cancer to qualify for the help. When she came to pick up the application, she saw this and left it there. “It is written” :)
WEEKEND IN BOSTON:
To say
I was anxious in anticipation of the surgery date is a huge understatement. On
the evening of Friday, February 6th, I received a call from
Cincinnati’s surgery scheduler. It was not the news I was told I would be
getting at the time of discharge the day before, a “for sure” date for either
next week or the following. Instead I was told that they were still trying to get
a surgery date lined up. Cincinnati Children’s was experiencing their most busy
winter in the history of the hospital, so a nine hour block of operating room
time was not easy to come by, especially because it had to be coordinated around
two surgeon’s schedules. The scheduler told me that the date they were trying
to get locked down was February 18th, a “maybe date” for now. She
said she would call me next week sometime with more information and “hopefully”
a confirmation of 2/18. I thanked her for her efforts, and told her I would be
eagerly awaiting her call. So…you have a boyfriend that you love, but he
doesn’t have time for you, what do you do? Find a new boyfriend, right? All I
knew is that I wanted the ugly lump out of my beautiful baby ASAP! I booked a
flight for Felicity and I to Boston Children’s Hospital, another world class
children’s hospital I had found out about online. We left the morning of
February 7th and arrived in Boston that afternoon. I packed to stay.
We had enough clean clothes to last for two weeks. Felicity did really well on
the plane. She only cried for about ten minutes, and slept most of the way. The
tumor was so large that it was causing two new creases to occur; one near her
shoulder and one in her neckline. These creases gave the organism that caused
the previous rash the perfect opportunity to return, and thrive. The rash was
once again weeping around the tumor, causing her extreme discomfort. When we
arrived, we took a taxi cab to the Emergency Department. We were taken to a
room right away, and met with doctors within minutes. The emergency room
doctors would handle her skin situation, but general surgeons were requested
right away to come and assess the tumor. The surgeon who saw her first asked me
“what was wrong with Cincinnati”, to which I replied “nothing, I love them…but
so does everyone else”. I told him that when they couldn’t give me a for sure
date as they told me they would, I panicked and caught a flight to Boston. He
said they could do the surgery but there was no way they could beat the “maybe”
date of February 18th because they would have to start from square
one. I was hoping they would use some of the imaging from Cincinnati and avoid
that. He said that it was like I was in a boat in the ocean. I had been through
some storms, got holes in my boat, patched up the holes, endured even more
rough waters and was finally approaching land…and now wanted to turn around
because I didn’t like the way the land looked. I liked my boyfriend analogy
better, mainly because I really didn’t actually have a visual on the land yet.
I told him if I had something to put
on the calendar, I wouldn’t even be there. He asked who Felicity’s surgeon was
and when I told him it was Dr. Dasgupta, he said he knew her very well…turns
out they were close friends! (He had worked at Cincinnati Children’s a few
years ago). He left our room to speak to her and returned within minutes. He
said that he asked Dr. Dasgupta what the hold-up was and she said they were
trying to get it done ASAP, but that Cincinnati Children’s was extremely busy
which was making the things a little tricky, but they were trying hard to get a
date secured. I told him we would go home and wait, and he agreed that was the
best choice.
Felicity
was prescribed bactroban for her rash and by the next morning, her skin was
beautiful! I wondered why the doctors back home had not prescribed the same
thing, maybe they didn’t know about this amazing ointment, I thought. I told my
mom, and she said “Bactroban, that’s what they used to give you for skin
infection when you were little”. So, it has been around for years!? I was just
relieved that she was now feeling some relief. She so needed it because the
tumor was becoming uncomfortably large.
View of Boston as
we were flying in
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Some random pics
from Boston adventure:
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On Sunday, February 8th, our return flight home was scheduled for a 7:00 pm take off. This meant we had an entire day to spend in Boston with nothing to do. Upon checking out of the hotel, we took a taxi to a church just a few blocks away, Saint Mary of the Assumption Parish. After mass an elderly couple stopped to look at the baby. I began telling them her story to which the woman replied “a tumor on a baby? Isn’t that rare?” I was about to tell her that it was, when her companion said “wait a minute, I had a growth right here when I was 6 months old”, he pulled down his shirt collar to show a scar in his left supraclavicular area!!! He said it was 76 years ago, and when they took it out, that was the end of it. I was amazed! What were the odds of that? It was as if God was telling me everything was going to be okay! The Man, whose name was Michael, said he was from Flint, and so we talked a little about Michigan. I asked him if he had any photos of himself as a baby (of course I wanted to see the tumor-out of curiosity), but he didn’t. It was such a special encounter. I called my mom and grandmother right away to tell them and they were equally astonished. How awesome our God is!
Back in Michigan, I received a call
from Dr. Dasgupta at 7:30 am Monday morning. “I heard you were in Boston over
the weekend, do you still want us to do the surgery? We are really trying to
move mountains to get it done on the 18th.” I told her that we did. I
was concerned that she was upset that I went elsewhere, but her scheduler
assured me that no one could blame me “I am a mother and so is Dr. Dasgupta. We
would have done the same thing”. That afternoon, the scheduler told me that
they had secured the 18th! We had our date! Maybe the trip wasn’t a waste
after all; Felicity was not flying under the radar.
We got a call from Felicity’s
oncologist, Dr. Brian Turpin on February 17th, the evening before
her surgery and one of the most memorable and joyous evenings of my entire life.
The final diagnosis came back from Dr. Fletcher: Myxoid Lipoblastoma...a completely
BENIGN tumor! Our prayers had been answered!!! I asked him if Myxoid Lipoblastoma
fit with what they saw under the microscope, to which he replied “no, we saw cancer”. There had been some
debate on the diagnosis due to the difference between the pathologists and
histologists at Cincinnati versus those of Dr. Chris Fletcher. So, they had
been diligently working all weekend to make a final diagnosis prior to the
surgery. This process involved collaboration between Dr. Chris Fletcher, the
expert pathologists at Cincinnati, as well a world expert geneticist who
happened to be at CCHMC that weekend (she only comes in about once every few
weeks).They tracked down from somewhere in the country, the unique FISH probe
required to locate the abnormal chromosome and the exact area of gene rearrangement.
They discovered that Dr. Fletcher’s diagnosis was correct because there were rearrangements
in chromosome bands 8q11-13 and
the PLAG1 gene showed involvement in the rearrangement, classic
Lipoblastoma. This had been the only way to be 100% sure about this new diagnosis,
which we all knew was nothing short of the answer to our prayers. Praise God! The
surgery plan was changed to coincide with Felicity’s miracle…no central access line
because there would be NO CHEMO! This diagnosis was even better than ANY of the
other previous possibilities that had been ruled out with the biopsy! Swollen lymph
nodes would have meant that an infection was hiding somewhere in her body. Cystic
hygromas are often linked to different genetic disorders, some of which have an
impact on reproductive organs, such as Turner’s syndrome. Lymph malformations
also have links to genetic disorders and can be very painful. Myxoid
Lipoblastoma is just a benign ball of embryonic white adipose cells, literally
baby fat J
Felicity underwent surgery to excise
the tumor the next morning, February 18th. The morning of the
surgery, even when the final diagnosis was back, Dr. Dasgupta stated “whatever
this is, it’s got all the smart people scratching their heads”. My mother and I
were a little concerned by this comment because the diagnosis was already
finalized. Then we realized what was happening: Dr. Dasgupta saw something that
looked nothing like Myxoid Lipoblastoma,
so she was not quick to accept the new diagnosis. She stated that she could not
be sure of it until the entire tumor was analyzed. The operating room had been
reserved for nine hours because Dr. Dasgupta was anticipating a more
complicated surgery. She was expecting that the brachial plexus had been
compromised. Removing tumor from it could have possibly resulted in partial loss
of left arm use or left neck movement. Felicity would have required some
physical therapy at CCHMC’s Brachial Plexus Institute if that were to have
happened. She assumed, from what she learned from the biopsy procedure, biopsy
specimen and MRI, that the tumor was not very well encapsulated and it would be
“a mess”. Thanks to the Lord, the surgery couldn’t have gone any smoother! From
open to close, it was only 1 hour and 45 minutes! The tumor was very well encapsulated,
a characteristic of benign tumors. The only issue was a segment that was
growing under her clavicle, so they had to break it to safely remove that
portion. That was within the plan, though. There were no bad surprises, only
good ones J
In reading over
Felicity’s hospital record from Sparrow Hospital, there are so many
inaccuracies! I would now like to set the record straight:
It’s actually quite scary that I
was being depicted as some kind of hypochondriac who denied tests and
medications left and right. My statements to nursing staff and doctors were consistently
contorted and manipulated so everyone looked like they were in the right and I
was wrong! I am very well educated and possess an AS in Biology from Lansing
Community College, and a BA in Multidisciplinary Studies from Siena Heights
University. I received my education from
two highly accredited schools! Yet, I was always being talked down to,
especially by the resident and attending doctors from her admittances at Sparrow
Hospital.
I requested hand washing vs. hand
sanitizer use to each person, whether doctor or nurse, who would touch
Felicity. I made the request for a couple reasons: a) hand sanitizer takes two minutes to be
effective and nobody stood around for two minutes waiting for the alcohol to
dry before touching Felicity. It would have been a ridiculous request to ask
them to do so when they could just wash with soap and water, giving her instant
and more effective protection. b) Due to the rash, Felicity had skin areas that
were very irritated; they were deep enough to serve as pathways for germs from
other patients. I did not want her to pick up anything else while in the
hospital! c) I didn’t want the alcohol to irritate the rash even more and burn her
open wounds. Yet I was being criticized for my request by both doctors and
nurses in person with unpleasant reactions such as rolling of eyes, as well as
comments in the hospital notes. Some nurses and doctors would even refrain from
touching her all together to avoid my request!
Doctors at Sparrow Hospital would
discuss care plans with me and chart reports that were very much different than
what we discussed face-to-face. I only wanted to get to the bottom of what was
causing the lump on my two month old baby girl’s neck. I only wanted the health care professionals to care about
her health! Dr. Yaney stated on January 6th:
“Patient seen and
examined. In with mother. 3rd visit in 3 days for similar, plus 1
visit to the PCP, plus appointment with hematology tomorrow (today). Has a
rash, which has not worsened over the last two days. She was prescribed prednisone, but it was not filled. Has not been
giving Benadryl either. So, had been here 3 times, but has not taken meds
prescribed. Left supraclavicular mass not changed. This is what she is
seeing Dr Gera for in the morning. Baby in no distress => laughing, cooing.
Rash is sandpaper like, could be strep. Strep swab (-).”
So, I was wrong for deciding not to use steroids and
Benadryl (which clearly states on the manufacturer’s label that it should not
be taken by children under 2 years of age)? Well, had I used the steroids, it
could have actually prolonged a proper diagnosis even more as it may have
temporarily shrunk the tumor before I even discovered it! This would have
undoubtedly done more harm than good for Felicity! Thank God for the still,
small voice of the Holy Spirit that told me not to panic into giving steroids!
His notes are also quite inaccurate in stating that the rash was no worse. It was
worse…that’s why I was there. Also, the mass had
changed, it was bigger than when I had discovered it about 36 hours before,
which I told him.
I declined vaccinations for
Felicity at her 2 month well baby check up with Dr. Stringer. My other three
children are all up to date on their vaccines. I am not against giving
vaccinations! What I thought was a “hunch” but now know was the still, small
voice of the Holy Spirit, caused me to decide against them that day. Dr.
Stringer practically yelled at me for making this decision, stating, “Do you
know what a risk you’re taking? I’ve seen kids die from pneumococcal disease!”
Look at how much further confusion it would have caused when I discovered the
lump just a week later! Especially
because Dr. Stringer denied the mass being there on December 29th!
It could have taken the diagnosis down another false path, wrongly attributing
the mysterious lump to a possible vaccine reaction!
I forgive each and every doctor who
misdiagnosed Felicity. This, admittedly, is probably so easy for me to do
because of the end result, which Praise the Lord, could not have been any
better. There is no excuse for their actions (or lack thereof) however I am not
without mistake in my life, we are all human. The reason I am exposing each of
their mistakes is so that they can learn from them, which is impossible if I
don’t make them aware of their part in Felicity’s story. I would never want
another child to have to go through what we did to get the health care they
need and deserve. Since medicine is in
essence, a practice, all of the doctors mentioned in Felicity’s experiences at
Sparrow, U of M, and MSU, NEED TO PRACTICE DIAGNOSING TUMORS! I will end
Felicity’s story with some photos of our journey. May God bless all of your
patients as he has blessed my little one.
April 2015 @
Ronald McDonald House Cincinnati… back in town for a check up
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Grandma Machelle holding me in one of Mother’s Day, 2015. Out to eat Hungarian the few comfortable positions to relieve food with Great Grandma Sugar and pressure from tumor Auntie Maria
The week BEFORE surgery:
Big brother, Gabriel holding her in this picture
Surgery Morning:
Me Kissing Felicity's chubby cheeks!! My mom holding Felicity,
Dr. Dasgupta behind them
Nine days after surgery:
Felicity and her cousin, Baby Josh, who’s just 10 weeks older than her :)
Five weeks after
surgery, left arm use back to 100%:
Mid-April, learning to sit up:
OUR FAMILY, EASTER 2015
I Sincerely Hope This Testimony Helps Restore The Faith Of Someone Who Needed The Reassurance That God Still Preforms Miracles! He Is The Same Yesterday, Today And Tomorrow :)
Fonda L. Juarez
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