Shock to Fear to Hope to Heartbreak
A family’s journey through Leukemia
December 2022.
Christmas 2022 was the first Christmas since 2019 that we
felt reasonably safe gathering as a family. The isolation of the pandemic is
finally behind us. Seeing and celebrating with those we love is so important to
our happiness. Indeed, it was a wonderful Christmas. My wife Joanne had
diligently prepared, wrapped gifts and decorated our home to create a wonderful
and memorable day for her family and especially her grandchildren. She made
that Christmas, which would be her last one with us, the best Christmas a
family could have. I so loved my beautiful wife.
January 2023.
In early January 2023 Joanne scheduled an appointment
with her nurse practitioner to address some stiffness and neck pain she had
been experiencing for about a month. She was diagnosed with a neck strain and
prescribed Motrin to relieve the pain. She was told to return in a week if it
did not improve. She returned to her nurse practitioner on January 10th where
they ordered a blood test to further investigate the issue. They told her they
would call her when the test results were available.
Around 6PM that
evening we received a call from the doctor’s office telling us we needed to go
to the emergency room at Emerson Hospital immediately. Joanne’s white blood
count was dangerously high, and that she could possibly have a serious
infection.
We arrived at
the ER sometime after 7PM where Joanne was examined and received a full battery
of tests to try to determine the cause of her elevated white count. It was a
long evening and around 2AM we were visited by the ER doctor. He told us Joanne
would need to be admitted for further evaluation. The blood tests showed no
apparent infection, but they pointed to a strong possibility of leukemia.
Leukemia, a
shocking and scary word that we knew nothing about but that we were about to
learn more than one would want to know.
Joanne remained
in the hospital for one week where she underwent more testing and received her
first blood transfusion to relieve the anemia she was experiencing. Leukemia is
a very tricky disease and has many different subtypes. Her bloodwork was sent off
the Mass General Hospital (MGH) in Boston for more advanced testing to
determine if it was in fact leukemia of something called a leukemoid reaction
which is a blood disorder resembling leukemia but not involving the same
changes in the blood-forming organs.
The test
results from MGH were inconclusive so a bone marrow biopsy was ordered which
would be performed at Emerson Hospital in Concord MA and an appointment was
scheduled with Dr Gabriela (Gaby) Hobbs the Leukemia Clinical Director at MGH.
Joanne was
diagnosed with breast cancer in the winter of 2021. A small malignant tumor was
surgically removed, and she received radiation treatments in the spring. These
treatments were intense, and she did suffer from skin burns on the affected
breast. Her oncologist was Dr Kimberly Brennan at Emerson Hospital. Dr Brennan
set up the appointment with leukemia specialist Dr Hobbs at MGH and told us her
mother, now in her eighties, was a leukemia patient of Dr Hobbs and had
survived over 20 years. This news put us at ease and gave us hope.
February 2023:
On February 8, Joanne visited the Leukemia Clinic at MGH
Boston. The clinic is located on the eighth floor of the Yawkee Building at
MGH. It is a very busy clinic and features an amazing view of the Back Bay and
West end of Boston. The waiting room was full of patients of all ages, some
showing their illness more than others. It is a very organized and efficient
department. Joanne’s day was filled with various appointments from 11AM until
4PM culminating with a visit with Dr Hobbs. She had many labs drawn including
blood samples that would be sent out for genetic testing. We met Dr Hobbs later
in the afternoon. She was an attractive woman with a small frame in her early
forties. She had a pleasant smile and kind eyes. She listened very intently as
Joanne explained what she had gone through and how she was feeling. She
performed a quick physical exam and then we sat to talk. She explained that
blood cancer comes in many subtypes, the most prominent being
myeloproliferative neoplasms (MPN), chronic myeloid leukemia and acute
leukemia. She told us the blood stains examined were inconclusive. She felt a
bit assured as the count of something called blast cells was low. Blast cells
are immature white cells that grow out of control squeezing out the hemoglobin
cells and platelet cells that we all need to be healthy. She explained that the
blood sent out for genetic testing would give a better picture as it would
discover mutations in the bone marrow that are the root cause of blood cancer.
She told us depending on the results Joanne could possibly be treated with oral
drugs, chemotherapy, a clinical trial if that was warranted or lastly referred
to the transplant team for a stem cell transplant. We found ourselves once
again leaving the appointment with more questions than answers and pondering
another scary phrase “Stem Cell Transplant”.
We went home
and awaited the results of the genetic testing.
Three days
later we received a call from Dr. Hobbs. Joanne had been diagnosed with
something called Chronic Myelomonocytic Leukemia or CMML1. It is a subcategory
of leukemia and is only seen in one out of 100,000 cases. It does present with
lower blast cells but is an active leukemia and needs to be treated before it
progresses to acute myeloid leukemia. This was the worst fear of Dr. Hobbs and
her counterpart Dr Weitzman in Concord. Acute myeloid leukemia is cancer in one
of its most explosive and violent incarnations. Its malignant cells push every
organ in the body to its limit. Joanne was immediately prescribed a
chemotherapy regime and referred Joanne to Dr Stephen MacAfee the head of the
MGH Stem Cell Transplant Department. We had a zoom meeting with Dr. MacAfee on
February 28. Dr MacAfee is a friendly but frank blood cancer doctor. He walked
us through what we would be facing. Joanne would receive three rounds of
chemotherapy, a drug called Decitabine. The treatments would happen in the
first week of March, April and May. It was hoped that the three rounds of
chemotherapy would create a reduced burden of leukemia and give Joannes body
the ability to gain strength for an Allogeneic stem cell transplant.
Allogeneic
transplant uses stem cells from a healthy donor, who may be a blood relative or
someone unrelated if their cells are a close enough DNA match to the patient’s.
In Joanne’s case her brother was a perfect match. We were optimistic. Joanne
would be scheduled for a May 17 admission date and receive her brothers stem
cells on May 24 or what they call day zero. Once in the body her brother’s cell
will begin to differentiate and produce brand new cells to create a brand-new
healthy blood factory. It was a cure.
It also was a
difficult road with lots that can go wrong. Joanne would receive a chemotherapy
that would completely wipe out her bone marrow and have to wait four weeks in
the hospital for her new blood system to develop. She would be severely
immunocompromised during this period and feeling quite ill. She would lose her
hair and have to wait some time for it to slowly return. About 12% do not
survive the procedure and only about 60% survive over 5 years. Once released
she would face a hundred-day recovery period at home with twice weekly visits
to MGH Boston to adjust her medications. At the end of that 100 day period
Joanne would undergo another bone marrow biopsy. The hope was it would show her
free of leukemia. If so she would still face a life on immunosuppressants but
be free of leukemia. Unfortunately, with leukemia you are never completely out
of the woods as relapse is a constant possibility with this disease. But we now
had a plan and a reason to embrace hope. But it was still February, we had 3
months of chemotherapy and transfusions ahead in a race against this strange
and unpredictable disease.
Joanne would say to me “Paul, can you believe I have
leukemia? How could I have gotten leukemia?” I stood there as if in a dream and
took a long real look at my sweet, beautiful wife.
March 2023.
Joanne began receiving decitabine chemotherapy infusions
at the NACA MGH Infusion Center at Emerson Hospital in Concord MA the first
week of March 2023. Decitabine chemotherapy is well tolerated, and the feeling
was that Joanne would not get ill from the treatment other than a little
nausea. This was all so new to us, and we were surprised at the amount of
people receiving chemotherapy. Cancer creates this whole other world you do not
know exists. Joanne would have five days of chemo monthly and weekly blood
tests to watch her hemoglobin and platelet counts. When her counts were low,
she would receive a blood transfusion. She had her blood tested every Wednesday
where it was determined if she would need a transfusion or not. We could pretty
much tell when she would need a transfusion. When your hemoglobin count drops
you become pale, tired and in need of daily naps. This condition known as
anemia indicates your body’s cells are not receiving enough oxygen.
The results of
the complete blood count or CBC test were posted on Joanne’s Emerson patient
portal some hours after the test. We became good at reading these results and
knowing when a transfusion was indicated.
One constant
during this entire process was the excellent nursing care Joanne received.
Joanne’s
infusion nurse at Emerson was a wonderful person named Jane. Jane had lost her
husband to cancer a few years prior and was acutely aware of what we were going
through and our fears. Jane worked with the oncologist Dr James Weitzman who
monitored Joanne’s condition and was in constant contact with Dr Hobbs and Dr
MacAfee in Boston.
When we first
met Dr Weitzman, he talked about the disease and was clear about the risks
Joanne faced. When we asked him what he thought we should do he paused and said
we should get our affairs in order and think about the quality of remaining
life. He was familiar with the difficulties and risks of stem cell transplants
as he had worked for Dr MacAfee in the MGH stem cell clinic. He called it a
high-risk high reward procedure. As a hematology oncologist he was also aware
of the aggressive nature of this dreaded disease. Dr Weitzman’s frankness about
Joanne’s condition did not sit well with Joanne. She felt his assessment was
grim as opposed to Dr Hobbs and MacAfee who focused on the fact that there was
a cure for Joanne’s disease. I was somewhat transfixed listening to Weitzman. I
felt that this man knows the truth about this disease. I then assured Joanne
that MacAfee and Hobbs say this will work and I believe them. Joanne looked at
me and said, Paul…can you believe I have leukemia. I hugged my dear wife and
kissed her on the head.
Joanne was a regular visitor at the MGH NACA infusion
center in Concord throughout March. She also had zoom meetings with both Dr
Hobbs and Doctor MacAfee that month where they discussed her progress and what
laid ahead. Our daughter Julie was also present via phone for these meetings.
Julie was a tremendous resource to Joanne and I throughout this whole process.
Being a clinical Audiologist, she brought a lot of medical knowledge to these
meetings and asked many pertinent questions throughout. Her presence brought a
lot of assurance to Joanne and me. She also had a wonderful loving relationship
with her mom which brought Joanne much comfort. Such a wonderful daughter.
Both Dr. Hobbs
and Dr. MacAfee would often say that we want to get you to stem cell transplant
before it becomes leukemia. But wait, I thought. Doesn’t Joanne already have
leukemia? We would come to learn what they were referring to was acute myeloid
leukemia or AML. This is the most serious type of leukemia, being very
aggressive and deadly. Joanne’s CMML1 had a reputation of progressing to AML so
we were in a race to get her to transplant before that progression.
April 2023
Joanne and I never discussed the risk of mortality this
disease posed. We both focused on stem cell transplant as our road to a cure.
It was something I thought about but did not verbalize. If I do not say it,
then it will not happen. I remembered as a kid how my mom would never say the
word cancer out loud, she would whisper it. Don’t tempt it, don’t give it a
chance to become real. But I know Joanne thought about it. She was always a
planner, and this was no different. She contacted our lawyer and made sure all
our legal issues were in order. She called me one day and pointed out where all
our home, insurance and retirement documents were. She inquired with the
doctors how long she would have if she did nothing. I remember one day she
comically said, “I’m a goner if I don’t do this transplant.” Once again, I had
no words.
The Leukemia
& Lymphoma Society matched Joanne with a peer. A person that had survived a
stem cell transplant and could share his/her experience with Joanne. His name
was Neil, and he had undergone not one but two stem cell transplants. In the
first which failed, Neil had received stem cells from his son which were only a
50% match. Two years later he had a second stem cell transplant, this time with
a doner found through an organization called “Be The Match ‘. This donor was a
98% match, and the procedure was successful. Neil spoke to us at length about
his experiences and what Joanne could expect. He was kind and positive but
honest when he said there would be hard days. The last I heard from Neil he was
cancer free for five years and hiking the white mountains with his family.
On April 18 we
spent the day at MGH where Joanne would be examined, and we would have an
orientation with a nurse from the stem cell transplant clinic. We met with Dr
MacAfee, and he was pleased that Joanne’s blood count numbers were close to the
normal range.
He felt Joanne
was medically fit for the transplant a month away but said they would continue
to closely monitor her numbers. Our home had to undergo a deep cleaning. All
dust had to be removed; the carpets needed to be shampooed. There could be no
plants in the house as they could cause a fungus risk. Joanne would have a
severely compromised immune system, and every precaution had to be taken. She
would have to use her own eating utensils, and they would have to be washed and
sanitized separate from the household dishes and utensils. She would need to
avoid crowds, and it was suggested people wear masks when visiting her. We were
told we could not be too safe. The nurse that was instructing us was named
Donna. She was humorously crass but very good at what she did. We had met her
in a previous visit to the clinic where she drew many vials of blood. One thing
about blood cancer is they draw lots of blood. She ended her visit by saying
“you can do this, follow the rules and this is a piece of cake”. But, she did warn
me that I should not spend a lot of time at the hospital as I would be on twenty-four
seven when Joanne came home to recover. I needed to build my strength and be
ready. But I thought differently. I was investigating renting a house in
Cambridge, close to MGH, so I could be there all the time. But in the end, none
of this mattered.
We left MGH and
thought, oh my God, this is really happening. Joanne looked at me and said,
Paul, can you believe, I have Leukemia. I hugged and kissed my beautiful
Joanne.
May 2023
We had one final round of decitabine the first week of
May. It was also around this time that Joanne discovered a small purple lump
growing under her breast. She thought that it was a rash and treated it at home
with creams. Dr Weitzman was not available, so nurse practitioner Elizabeth
Conway came over to look at the rash. She was unsure of the cause and thought
it may be a fungal infection. She had Joanne see a dermatologist who also was
unsure and wanted to biopsy it. We decided not to do the biopsy for fear of
infection and decided to wait to have Dr Weitzman make the call. We did not
want anything to get in the way of Joanne’s admission date. The dermatologist
gave Joanne a prescription for the anti-fungal medication fluconazole. The next
day, May 5, Joanne had her final decitabine chemotherapy infusion. The day
ended with the bell ringing ritual. All the infusion nurses gather to cheer
when you have finished your prescribed chemotherapy. Joanne had performed this
ritual when she finished breast cancer in June of 2021.
I’ve already rung that fucking bell she said,
I don’t need to ring it again. But she did. She rang the bell, she smiled,
everyone cheered and then we took pictures. Joanne ringing the bell, Joanne and
I ringing the bell, and oh wait, we need a video. We knew we would possibly be
back for a transfusion, but we did leave thinking part of this journey had been
completed. We hugged.
There were things I was worried about though.
Joanne had lingering health issues. When doctor MacAfee was meeting with us, he
explained the side effects of chemotherapy that people experience. He talked
about them as if to say you don’t need to worry about them, we will worry about
them and give you treatment if you feel ill. What we would come to learn is
side effects do not exist. These are effects of the toxic compounds being put
in your body. But when Dr MacAfee said some people experience gastrointestinal
issues a red flag went up in my head. Joanne had suffered with chronic stomach
problems for years. She suffered from recurring diverticulitis for as long as I
can remember. She lived on laxatives and suffered a lot. She saw many gastro
specialists and the best they could do was prescribe Linzess. But getting
diverticulitis with an immunocompromised body was a scary proposition.
The weekend of
May 6 our kids came and deep cleaned the house. It was a busy weekend but so
wonderful to be together as a family. The plan for Joanne to come home to a
safe space to recover from a stem cell transplant was in place. Now we just
needed to wait for the MGH admit day to come. On May 12, five days before
Joanne was scheduled to be admitted for her stem cell transplant Joanne went to
visit nurse practitioner Raquel Donnely at Emerson Hospital to follow up on her
rash. While at the hospital Joanne had labs drawn. One of the test called a
comprehensive metabolic panel was ordered. One of things this test measures are
how the kidneys and liver are working. That evening, I checked the Emerson
patient portal and read the report. I was alarmed to see that three of the
liver function tests were high, or like really high, six times higher than they
should be. I went back and checked previous tests to confirm what I was seeing.
I had no idea what this meant but knew it was not good. I said nothing to
Joanne but called my sister Carol who is an RN and a retired oncology nurse,
and she explained what the numbers I was reading meant. She told me it could
indicate liver damage of possibly a reaction to chemotherapy. I broke down in
tears talking to her and told her how scared and worried for Joanne I really
was. The past five months of fear and uncertainty was crashing down on me.
The next day
was Mother’s Day. Our family was meeting at my son’s house to celebrate the
mother’s and spend time with Joanne before her admission to MGH on the next
Wednesday. I took my son Jason and daughter Julie aside and told them what I
saw in the report and my fear that the transplant may get canceled. We enjoyed
the day with our kids and grandkids and had a wonderful time. Little did we
know this would be the last time the grandkids would see their loving Grammy.
The next day was Monday May 15. I awoke that
morning and awaited a call for Dr Weitzman ‘s office with their reaction after
reviewing the comprehensive metabolic panel report. No call. Joanne was busy
packing and preparing her move-in to MGH. At around noon I decided to go out
and get my haircut. I drove to Westford MA and was about to get out of my car
when the phone rang. It was Joanne and she was hysterical. They canceled the
transplant she cried, Dr MacAfee called said my liver numbers are not right,
and it would be too dangerous. I told Joanne I loved her, and I would be right
home. I hung up the phone and cried.
The next day Dr MacAfee called and said they
reviewed Joanne’s chart and saw that she had been taking anti-fungal medication
fluconazole. That is the medication she had been prescribe for the purple rash
under her breast. Dr MacAfee said it was the team’s feeling she was probably
allergic to the medication and to discontinue using it. He said it would
probably take a week for it to clear her system and they would re-test in two
weeks. He also said it may be a blessing in disguise as this would be one of
the first medications she would have received after transplant.
He reassured Joanne once her numbers returned
to normal, they would re-schedule the transplant.
We felt somewhat better but once again we were
in that waiting game.
Trying to explain all this to love ones and
family is so difficult. Everyone cares and are really concerned but have no
idea of the inner dynamics of being ill. This was especially hard for Joanne’s
parents who are in their nineties. Joanne was their caregiver for years and
shopped and nurtured and was always there for them. When she became ill her
brother Joe, who is the stem cell donor and lives in Connecticut took over the
shopping duties. Joanne’s parents always maintained decent health and couldn’t
understand why doctors could not just fix their daughter. That had been the way
it always worked for them. Joanne’s mother Shirley, a sweetheart, but dealing
with some mild dementia would ask Joanne when she would be able to come and
help her get out her summer cloths. Joanne would often say, I can’t talk with
her, she wears me out. Joanne’s dad told me that there is a person that lives
in his building that has leukemia and he seems fine. Why can’t they do that for
her. Unfortunately, I told him, not all leukemia fits in one basket.
Joanne was very loved by family and friends,
and many prayed for her recovery, but it was very difficult to explain the
complexity of what we were going through. Some situations just do not have
simple answers.
Joanne’s liver numbers did improve in time,
and she was given a new transplant date. She was to be admitted for transplant
on June 18.
On May 31
Joanne started running a low-grade fever of 100.4. She had another blood test
and this time something new was showing. Joanne’s neutrophils, those white
blood cells that help our body fight infection were dropping dangerously low.
June 2023
Joanne was not feeling well the first week of June. She
began running a low-grade fever of 100.4. We called Dr Weitzman’s office and
were told she could take Tylenol every six hours and call back if the fever
rises over 101. Her fever went away with the Tylenol, but she still was not
feeling well. On June 6 Joanne went to the lab for her weekly blood work. Her
complete blood count showed her white blood count dropped to 0.7 and her
neutrophils were at zero. That evening her temperature spiked to 102 and she
felt extremely ill. We called Dr Weitzman’s office at Emerson Hospital in
Concord, but he was not in. Joanne spoke to his nurse and the conversation did
not go well. Joanne was very anxious about the situation, but the nurse told
her she was just fighting something and to take Tylenol and that she would be
fine. This went on for two days and we never heard back from Dr. Weitzman. The
next day his nurse told Joanne he was at a conference and to continue what she
was doing and to go to the ER if her fever reached 102.8. Joanne was extremely
upset with the nurse and concerned about the way she was feeling.
On June 8 she
slept most of the day and when she woke in late afternoon her fever reached
103.
We headed to
the Emerson Hospital emergency room. What we know now is that you do not send a
person with active leukemia to a hospital emergency room. At that time, we did
not know we were in the presence of the disease. The emergency room physician’s
first instinct was sepsis so that was the first thing they ruled out. After
seven hours in ER Joanne was sent home with script for Cipro and Flagyl to
treat diverticulitis. Joanne went home and took the antibiotics, but she
continued to get weak and tired with fever. The nights were difficult, we both
were exhausted Finally on Sunday June 11 our daughter Julie intervened and told
us we needed to call the MGH Boston Leukemia clinic. I called Dr Weitzman, and
he said that we needed to go to MGH Boston first thing in the morning. We were
at MGH at 9AM.
We were back in
the room where we met Dr Hobbs over four months ago. The nurse we met named
Donna walked in the room. She looked at Joanne. I handed her the bloodwork from
the Emerson emergency room. She studied the report. She’s neutropenic she said.
She ordered bloodwork, EKG and told us Joanne will be admitted to the
Hematology Oncology unit on Lunder 9. She needed to be on IV antibiotics
immediately and that she has no immune system.
Julie drove from Connecticut and arrived as Joanne was
getting settled in her private in the Lunder building at MGH. Lunder is a ten
story building housing the Mass General Cancer. Built in 2011 it is a state of
the art facility using the latest medical technology.
As we were standing in the hall waiting to enter Joanne’s
room a group of doctors, nurses and family members were gathered in front of a
patients room. We could overhear the conversation as one doctor said to the
family members, I know this is difficult I’m so sorry she had to come back.
Someone was very sick. This gave Julie and I since of the serious nature of
this place and just where we were. We would remember this moment.
The attention in care Joanne received at MGH. was
immediate. She was immediately put on IV antibiotics and the admission chart
listed her diagnosis as Febrile Neutropenia, a condition where you have a low
number of white blood cells called neutrophils in your blood. When you have low
levels of neutrophils in your blood, your immune system is weakened, making it
harder for your body to fight infection. Her first three days were packed with
tests. She was visited by specialists in oncology, hematology, infectious
diseases, dermatology and palliative care. A PICC line was inserted into her
arm so she could receive multiple IV medications and blood draws. She was given
a bone marrow aspiration on day three. The procedure was performed by Dr
Amrien. The man was amazing. The nurses said he could extract bone marrow with
his eyes closed. The biopsy of this bone marrow was the test that would shed
the most light on Joanne’s condition. It was revealed that Joanne’s bone marrow
and blood factory were indeed failing. Joanne had crossed the line and
progressed to Acute Myeloid Leukemia.
Acute myeloid leukemia or AML is really a very
devastating total body multi-organ system disease that starts as a
proliferation of uncontrolled growth of immature cells within the bone marrow.
These immature cells called blasts crowd out all the good blood cells. Once
this uncontrolled growth starts, the disease becomes one of bone marrow
failure, resulting in infection, bleeding, and often multi-organ system
complications. The risk factors for the disease's development include exposure
to prior chemotherapy or radiation therapy.
We will never
know how Joanne developed this dreadful disease, but Joanne did undergo some
intense radiation therapy for breast cancer in 2021 which could be a
contributing factor.
Standard
therapy for AML has been the same since it was discovered in 1973. It still
yields the highest patient remission rate. The name “7+3” comes from the
duration of the chemotherapy course, which consists of 7 days of standard-dose
cytarabine to slow the growth of cancer cells, and 3 days of a drug that
attacks cancer cell DNA called daunorubicin. Joanne received an updated version
of “7+3” called Vyxeos. Vyxeos combines cytarabine and daunorubicin into tiny,
bubble-like carriers called liposomes, which carry the drugs to the bone
marrow. The liposomes are absorbed by the immature blast cells more than by
normal blood cells. Once inside, the liposomes release the drugs to help kill
the blasts. The goal is to achieve remission and enable a patient to undergo a
stem cell transplant. The truth about AML is that it has high relapse rates.
Relapse will almost certainly result in patient death. The goal now was to get
Joanne to remission and healthy enough to get to transplant. This would not
happen overnight. The average time for the patient’s blood system to begin to
recover from this chemotherapy is 28 days. Joanne would get extremely ill from
the toxic effects of this chemotherapy.
Julie and I adjusted our daily lives to being at the
hospital and advocating for and caring for Joanne. We were able to assist her
throughout the day and do what we could to keep her comfortable. I would make
the 100-mile round trip to the hospital every day while Julie had a 240-mile
round trip while juggling being a loving daughter, advocate, Mom and wife.
Jason would come to the hospital many evenings and drive me home late at night
then be at my house at eight in the morning to drive me back in. This was a
full family effort to do what we could to support our loved and cherished wife
and mother. The hospital food was a problem for Joanne. She needed soft food
and did not have many choices. I had always cooked for Joanne at home so every
morning I would cook her a special diet meal and take it with me to the
hospital. Every time I arrived at the hospital, I would look Joanne in the eyes
and tell her I loved her. Her kind-tired eye looked back at me and said, I love
you too Paul.
The leukemia doctors on Lunder 9 were nothing short of
amazing. These are among the best oncologists and specialists in leukemia and
blood cancer. They were pinpoint focused of getting Joanne into remission.
Joanne asked oncologist Dr Amrein if he thought she would make it to
transplant. We are going to do everything possible to make that happen, he
answered. This is what we do Joanne he said. We do it every day. Most of the
blood cancer doctors are researchers also. There would be a new head oncologist
on the floor every week.
From day one the nurses and personal care assistants that
cared for Joanne were wonderful. Their caring concern for their patients is
always on display and brought much comfort to Joanne and our entire family.
Their job is not an easy one but their knowledge and grasp of the advanced
medical procedures and the cancer medications that they were deploying
displayed an unparalleled level of competence.
They are
dealing with seriously ill patients and Joanne was seriously ill.
The effect of
the induction chemotherapy Joanne received caused very low blood counts and
made her very sick. Early on she developed a terrible rash on her back that was
extremely painful. But every ailment was immediately addressed by hospital
specialists. Dermatology prescribed a medication that started healing the rash.
Infectious disease doctors were monitoring Joanne daily to address any signs of
infection. Her history of diverticulitis was a constant concern.
On June 23 her
oncologist Dr Bruner visited us to discuss another chemotherapy that had shown
success in clinical trials. Joanne’s genetic testing has shown that she had a
DNA mutation called FLT3 that caused her bone marrow to produce immature blast
cells. He suggested that it may be beneficial in addressing Joanne’s AML. It
was an oral medication taken twice daily for two weeks. Joanne asked me what I thought,
and I had no answer. I was overwhelmed by everything that was happening and
asked Dr Bruner, if it was his wife, what he would do. He replied he would do
everything possible to help her which would include the new chemotherapy. The
next day Joanne’s started the drug Midostaurin to address the FLT3 mutation in
her bone marrow.
As the month progressed the physical ordeal that Joanne’s
body was undergoing became tougher. She suffered from fevers, nausea, mouth
sores and gastrointestinal issues. Her O2 levels would drop, and she would have
to go on oxygen. Yet through all this she remained stoic. She barely shed a
tear and faced every hardship. Getting to a stem cell transplant was the goal
and her reason to keep going on.
Joanne had a nurse named Susan for three days. Susan
asked Joanne about her career. Joanne explained how she was a retired reading
specialist and how she had taught for years and became a reading tutor in
retirement. Susan became very interested and told Joanne how her grade school
son had difficulty reading and she didn’t know how to help him. Well, she came
to the right place. Joanne talked to Susan at length about strategies to help
her son. She told her every child can read, you just need to meet them where
they are and never give up. Read with your child every night, it will make a
world of difference. As Susan was leaving the room she looked at me in said, “it’s
so wonderful to talk to someone that knows what I’m dealing with”. Acute
myeloid leukemia could not take the teacher out of Joanne.
Joanne’s would have a blood draw every morning around
five AM that would get sent to the lab. The results of these tests would be
published on her patient portal around seven AM. Julie and I both had the
patient gateway app on our phones and would get a notification that there were
new test results. We would talk or text every morning about how the blood
numbers looked. What we were most interested in was the neutrophil count. A
rise in the count would indicate that her body was producing healthy blood cells,
and her body could again fight off infections. The last weeks of June were very
difficult for Joanne. She had running fevers over 103 and had developed a
terrible rash on her back. She was administered an opiate medication to address
the pain and nausea which made her sleep most of the day. She was very upset
about how tired and sleepy she was. I was becoming extremely nervous about her
condition and at one point was afraid to leave for the night as I thought she
may not make it. Her oncologist during this time was Dr. Miller. On June 29 Dr
Miller told me that this all was an effect of the chemotherapy, and he expected
to see her blood numbers climb within the next ten days and that her condition
would improve. Until that time Joanne would remain seriously ill.
Joanne was assigned a physical therapist as soon as she
arrived at MGH. The plan was to get her on her feet and walk every day. Her
therapist was on extremely competent and friendly woman named Jess. Jess would
peek her head in the room, look at Joanne and say, “Hey You”. Joanne would
light up every time she saw Jess. They formed an incredible bond. Jess not only
provided therapy for Joannes body she lifted Joannes spirit. She told Joanne
together they would get through this, and Joanne would get home and go on to
transplant. Jess went on vacation for a week and was replaced by another
therapist in the interim. In her conversations she happened to mention that
patients that have difficulty walking during their recovery often must go to
rehab before going home. This very much upset Joanne. I assured Joanne that
would not happen that I would build a rehab at home before she went to a
facility. When Jess returned Joanne relayed to her what she was told about
rehab. Jess smiled and said to Joanne, “that’s not going to happen Joanne, I’ll
kick your ass before you go to a rehab.” As June ended and July began Joanne
remained very ill and more bedbound.
July 2023
On July fourth, a blood culture showed bacteria in Joanne’s'
blood. This could mean a blood infection which could lead to sepsis which could
be fatal. Testing showed the bacteria was forming in Joannes pic line and the
line would have to be removed, and she would have to go on regular IV for five
days. This was very painful as she was receiving multiple IV’s and transfusions
daily. But the good news was the culture showed no blood infection. On July 6
Joanne was scheduled for a bone marrow aspiration and biopsy to test the level
of active leukemia in her marrow. She was on oxygen, receiving platelets and on
a Lasix and potassium drip. Dr Hobbs visited Joanne and told her that she
couldn’t lose hope. Joanne always was happy to see Dr Hobbs and had great faith
in her ability to get her through this. We also began to see something that
lifted our spirits. Her neutrophil count was starting to rise. It had been at
zero for weeks but now showed at .03. Dr Hobbs said once her blood counts
started returning, they would begin rising fast. July 7 was a good example of
the ups and downs of this complicated disease. Joannes' liver numbers were
concerning, and the doctors were concerned about the possibility of developing
clots. And then the resident who was overseeing Joanne, Dr Shannan Cleary
arrived at her room with some incredibly good news. Joanne’s biopsy showed no
signs of active leukemia. She was technically in remission for leukemia. Joanne
looked at Dr Cleary dumbfounded and said “really”. I looked at Dr Cleary and
started to cry, hugged Joanne, and Dr Cleary and Joannes nurse started to cry
with me. It was a wonderful moment of hope on this grueling journey. Dr Cleary
told Joanne the stem cell team had been contacted and a new date would be
scheduled for transplant.
Even with this
hopeful news Joannes' body was ravished by the effects of the toxic
chemotherapy and it would be a slow process of recovery. As Joanne’s blood
numbers steadily returned, Julie became concerned about her psychological
well-being. She seemed unable to smile and to experience joy. She was still in the midst of a very traumatic experience and new
physical ailments began to arise. Joanne lost the ability to urinate and had to
be catheterized. For three days, Joanne was cared for by a nurse named Nana.
This incredible person would leave a lasting impact on Joanne as well as our
whole family. As sick as Joanne was Nana would insist Joanne get out of bed and
into a chair even with her catheter. She would insist Joanne not use a bed pan
all the while compassionately caring for her. At one point, she looked Joanne
in the eye and said “Joanne, do you see all these IV lines and all this
medicine you are on. This medicine can do nothing to heal you, only you can
heal you. You need to constantly tell yourself; I will get better.” Nana was a
healer both physically and mentally. She restored Joanne’s hope. She helped
Joanne teach her body to urinate on its own and get out of the catheter.
On July 17 Joannes physical therapist began
taking Joanne on small walks. She would have her stand up and sit down in a
chair over and over. Small walks in the room led to walks up and down the hall.
Before long she had Joanne walking with a cane and climbing stairs. All this
time her blood numbers continued to improve. Though her mobility was improving,
she still had some physical ailments that continued to plague her. A chest Xray
revealed that she had developed pneumonia in her lungs. The infectious disease
doctors determined it was fungal in nature and began treating it with
anti-fungal medications. She also had developed an abscess in her colon around
her diverticulosis that was treated with anti-biotics. One of the toughest
symptoms was that she started developing swallowing problems.
Joanne had a
consultation with a clinician from the speech pathology department. There was a
fear that she could aspirate while drinking liquids so everything she drank had
to be thickened. This was an exceedingly difficult period as it affected
Joanne’s ability to get calories and nutrition which she needed to regain her
strength. The oncologist covering the floor that week was Dr Gaubert. The
doctor explained that the chemotherapy had affected all the cells in Joanne’s
digestive system, and it would take time for new cells to grow back. He felt
once that happened her swelling would improve.
Joanne showed
very little emotion during this period. This very much upset Julie. That is not
my mom, she declared. It is like she is not there. She demanded a meeting with
palliative care to address Joanne’s depression. This got a consultation with
the Oncology Psychology Department. A pleasant woman named Doctor Storie met
with Julie and listened to her concerns about Joanne.
“Are you a
medical professional,” she asked Julie. “You seem truly knowledgeable about her
condition.” Julie explained that she was an Audiologist and not a medical
doctor, however she knew enough about her mom to know something was not right.
Doctor Storie met with Joanne and concurred with Julie’s assessment. She
diagnosed Joanne with post-traumatic stress and prescribed a medication that
would help her. Within days of the consultation, we began to see a marked
improvement in Joanne’s demeanor. Once again Julie’s presence and closeness to
her mom was invaluable.
On July 28, forty-seven
days after Joanne had been admitted to the Mass General Cancer center she was
deemed well enough to go home and recover for a stem cell transplant. Go home
and fill your bubble Dr Hobbs told her. Our kids had converted a room on the
first floor of our home to a bedroom and configured a handicapped bathroom and
bath. She left with instructions for the many medications she would have to
take. She would have home visits from a nurse and a physical therapist. She was
also scheduled a visit at the Mass General Leukemia department in Boston in a week’s
time to monitor her progress. But it was home for Joanne and that was a taste
of sweetness and hope for all of us.
Having Joanne home was such a relief, but it was also extremely
hard. The first night I slept on the couch so I could be close to her and help
her if she needed any help during the during the night. The next day, I found
myself exhausted. My daughter Julie came up with a solution a baby monitor. We
put them monitor next to Joanne‘s bed and another up in my room upstairs so I
was able to sleep in my bed and try to get a good night’s sleep. Joanne could
call me if she needed any assistance throughout the night, I turned the monitor
up extra loud to make sure that I would hear her. My sleep was still very
restless. I would wake up in the middle of the night, thinking that I heard her
calling me only to run downstairs and find her sleeping. A challenge during the
day was Joanne‘s medication‘s. I created a spreadsheet so we could track all
her meds and the time she needed to take them. Joanne was still having
difficulty swallowing so many pills had to be crushed, or put into applesauce
so she could swallow them . It was a long session getting her medication‘s into
her. Still there was joy just by the fact that Joanne was home with us.
On August 14,
Joanne’s fourth day home she started to experience stinging in her eyes. She
had be prescribed soothing eye drops which she used but still felt discomfort.
When she woke the next morning she had developed the inability to totally blink
her right eye. She called the ophthalmologist and scheduled an appoint for that
afternoon. When the doctor examined her blink problem he described it as Bell’s
palsy, a neurological disorder that causes sudden weakness or paralysis on one
side of the face. He was unsure of the cause but felt it may be an effect of
the chemotherapy Joanne had received and recommended we have the doctors at MGH
examine her. As it turned out we had an appointment at MGH the next day. When
we arrived at the MGH Leukemia clinic we met with Dr Letourneau from the
infectious disease department who checked Joanne’s pneumonia and felt she was
healing nicely. Joanne then went for a cat scan on her belly to make sure her
diverticulitis was not showing signs of infection. When we saw the Leukemia
oncologist he immediately seemed concerned about the blinking problem she was
experiencing. He questioned her about the onset of symptoms and performed some
neurological tests on her. He said he would meet with Dr Hobbs and be back.
Soon after the oncologist, Dr Hobbs and Dr McAfee entered the room. Dr Hobbs
told us they would need to perform a lumbar puncture on Joanne’s spinal column
and extract some spinal fluid. Their fear was that leukemia cells had
penetrated the spinal column and was putting pressure on cranial nerve VII, also
called the facial nerve, which connects the brain to the muscles that control
facial expression. When will we do this, I asked Dr Hobbs. Right now she said.
This is very serious and needs to be delt with immediately. She said that after
they had extracted the fluid for testing they would inject chemotherapy to deal
with any possible leukemia. She said Joanne would need to lie still for an hour
after the procedure and if she had no adverse symptoms she could go home. She
said she would call us tomorrow with the results. Once again shock and fear.
I waited in the
hallway while they performed the procedure. As I was waiting Dr MacAfee was
walking down the hall, he saw me and stopped to talk. He told me he knew how
hard this was but the plan was still to get Joanne well and to transplant. He
said when we hit roadblock, we find a way around it. Thats our job. He wished
me well and left. I went to Joanne and waited for her to recover. We drove the
hour drive home and waited for Dr Hobb’s call the next day. Dr Hobbs called at
11AM and told us Joanne would need to be readmitted as they had found leukemia
in her spinal fluid. She said she would receive three more lumbar punctures
with three more doses of chemotherapy. She said the goal was to eradicate any
leukemia cells in her spinal fluid. She once again told us not to give up hope
she thought this could work. Joanne was back at the MGH Cancer Unit on Lunder
10 after a short six days at home.
On Monday morning, July 7 Joanne would receive her second
lumbar puncture and dose of chemotherapy and his spinal column. The procedure
would happen in her room on London 10 two doctors and two nurses arrived in a
room around 10 AM. Dr. Hobbs was also there and ultrasound machine was wheeled
into her room so that the doctors could locate the best spot on her spinal
column and audit to do the puncture, I was told that I could stay with Joanne
in the room for the procedure, but I would have to wear a mask and put a net
over my hair. The room was prepared to be somewhat like a surgical suite Joanne
would sit upright on her bed and she would lean over a table wish she could
rest her arms and head. I was on the other side of the table, face-to-face with
Joanne, holding her hands and looking her directly in the eye, I felt the
intensity of the moment as the doctors prepared to insert the needle into our
spine. I looked into my loving wife’s eyes and held onto her hands. I saw a
brief grimace on her face as the needle entered her lumbar. I could hear one of
the doctors say we’ve got it get Dr. Hobbs in here Dr Hobbs into the room,
fully gown with a mask on and a vile of chemotherapy in her hand I saw her go
behind Joanne to prepare to inject the dose of chemotherapy into her spinal
column. I was totally overwhelmed by the moment and started to cry. I heard Dr.
Hobbs say that’s it folks we’ve got it thank you all your help I was sobbing.
Dr. Hobbs looked at me and asked me if I was all right. I hesitated for a
moment and said I’m just grateful. I’m just grateful for your people and
everything you do. Joanne had to lay on her back for 45 minutes as a precaution
after the procedure. This scene would play out two more times over the course
of the week . The fourth and final spinal puncture happened on Thursday, August
11 by the end of the day Joanne was released in once more. We were allowed to
go home to result to await the results of the procedure. Once again, we felt
great relief that Joanne was allowed to go home to her house . on Friday night,
August 11 around 8:30 in the evening Joanne and I was sitting at home watching
Ted Lasso. It was one of her favorite shows and gave her a lot of joy. I heard
a day on my phone and saw that there was a message on the patient portal and it
was from Dr. Hobbs and said hi Joanne the results of the last LP shows that
your that you are clear of leukemia. This is great news. We will talk more on
Monday. Signed Dr. gabby Hobbs I looked at Joanne and said oh my God honey
you’re clearable Kemia. You’re clear of leukemia. This is unbelievably great
news. Joanne looked back at me and said really she hesitated again and one more
time said really I showed her the message from Dr. Hobbs once again. It was
just a moment of joy.
The next morning was a Saturday. Joanne had a visit from
a physical therapist that morning just to assess the situation to make sure
that our house was equipped properly. He was satisfied with everything he saw,
and he talked to Joanne a little and he did notice that her legs were a bit
swollen. He suggested that maybe it would be a good thing if she wore
compression stockings, we had compression stockings that we had brought home
from the hospital. I assisted Joanne and put in the two compression stockings
on her legs. that afternoon my son Jason, his wife, Jessica, and Grandchildren
Gabe and Elise would come to visit us. We would spend the afternoon sitting
outside on the deck, enjoying the beautiful day and each other’s company. as
the day went on, I could see Joanne getting more tired. Jason’s family kissed
Joanne. Goodbye and left for the day around five. Joanne had complained that
the compression stockings were bothering her and asked me to help her remove
them. When I took the compression stockings off her legs, I noticed that both
of her shins were very red. They almost looked like she had a sunburn she told
me that they really hurt. We put sauna cream on her legs before she went to bed
that night the next day August 12 a Sunday Joanne woke up in the morning
telling me she felt like she had a small fever. I gave her a dose of Tylenol
along with her other medication around 11 o’clock that morning she told me she
felt like her fever was rising. I took her temperature and saw that she had a
101.4 fever. Period I had the phone number for the Mass General Lunder 10
nurses station and I called them. I reported to the nurse that Joanne was
running a fever. The nurse instructed me to give her another dose of Tylenol
and to call her back in four hours and let me know what the fever was. At 2
o’clock that afternoon when I took Joanne’s temperature for a second time her
fever had risen to 102.8. we both felt this feeling of dread. I reported the
temperature to the nurse and she told me she would call Dr. Hobbs to figure out
what we should do next. Around 3 o’clock that afternoon we received a call from
Dr. Hobbs. Dr. Hobbs said I’m sorry to tell you this Paul but you need to bring
Joanne back in and you need to do it right away. We only have one bed available
and I don’t want her to have to go to an emergency room. Joanne would leave the
home that she loved for the last time and once again we were back at Mass
General Hospital. that night around 9 PM. I prepared to leave for the night and
go home. Before I would leave every night I would always make sure that Joanne
had everything she needed. We would set up her table so she had a drink that
she could reach some applesauce and she could reach her phone. I looked my
beautiful wife in the eyes and told her I loved her. She looked back at me and
said Paul I get scared every time you leave. I assured her she would be fine.
She was in great hands and I would be back first thing in the morning.
Julie and her family had gone to Lake George for his
final summer vacation. Julie was hesitant about leaving, but both Joanne and I
told her that everything was fine. She needed to take her family on vacation. I
texted Julie and let her know that Joanne was back in the hospital. Julie
called me back immediately, genuinely concerned. She asked me if I thought she
should come back. I told her to stay with her family. This is going to take a
little while they figure out why mom has a temperature. I could tell from her
voice that she was very unsettled.
The Mass General Gateway patient portal always lists the
reason for admission. What I saw on Monday morning sank my heart. it said
Joanne Beauchamp, acute my leukemia in relapse.
Joanne was immediately put on remission induction
chemotherapy. She was given a cat scan on her belly that revealed an infection
in her colon. Once again, the infectious disease doctors put her on IV
antibiotics to address the infection. Dr Hobbs told us she would be in the
hospital for at least another 10 days to finish the round of chemotherapy. It
was very disheartening. The red rash on both of her shins turned blood red and
very painful. It was diagnosed as Petechiae, tiny red, purple, or brown spots
that appear when small blood vessels near the skin’s surface break and allow
blood to escape. It is a common malady for people with acute myeloid leukemia.
On Tuesday of that week Joanne’s platelets and
hemoglobin counts began to drop. The rash on her shins became more hot and
painful and began to blister. My sister Carol came to visit Joanne and was
immediately very concerned about the situation. She had spent years working in
oncology and could sense when the situation was spinning out of control. Joanne
was experiencing pain in her stomach and anything she ate was going right
through her. On Wednesday evening Julie called and talked to her mom. Julie
called me back in tears and said, “she doesn’t sound good dad, she has that
sound in her voice just like she did when she was very sick”. I consoled my
daughter and told her she needed to enjoy vacation with her family, and that
she could see her mom on the weekend. Julie and I ended our call both in tears.
On Thursday I sent a message to Dr Hobbs that I would like to meet with her. I
received an out of the office message saying that Dr. Hobbs was away and one of
her nurses would get back to me. Joanne was scheduled for an MRI that afternoon
and I decided to go for a walk in Boston and get some air. While I was walking
my phone rang, It was Dr Hobbs. She told me she was at a conference, but she
had time to talk. I began to sob as I asked her the question, Dr Hobbs, is my
wife going to survive. There was a pause and Dr Hobbs softly replied, “That’s a
very good question Paul. From looking at her chart she appears to be in relapse
and her blood numbers are very concerning. She said she was so sorry, but
Joanne was a very sick person. I thanked her for her honesty and asked her to
ask the doctors to keep us informed. She said she would do so and then remarked
how she was so grateful for our support of Joanne, having family members like
you as a part of a patient’s team and life makes a world of difference. I know
that Joanne felt that support and love. She also felt Joanne would not have
progressed as she did without that support.
I spoke to Julie and Jason and relayed my
conversation with Dr Hobbs. Julie wanted to return immediately but I told her
to return on Saturday. Mom was still here. Jason arrived at the hospital that
evening and responded differently. Ever the optimist he said, mom has come
through this before and I think she will this time also.
Joanne was very low on Friday. The oncologist
that week was Dr Hock. He visited that morning and explained how Joanne’s
platelet count was very low, and she would need a transfusion. He said she was
a serious bleeding risk. The nurses would not let her out of bed to use the
bathroom for fear she would fall. The fellow on that day was Dr Song. He told
me there was something they saw on the MRI and Joanne would be going down for a
cat scan that afternoon. He showed great concern. Later that afternoon Dr Song
came to Joanne’s room. He told us the cat scan showed Joanne had bleeding in
the brain. My heart sunk. Joanne looked at Dr Song and said, does this mean I’m
not going to get my stem cell transplant. Dr Song replied, “that will be
somewhere down the road Joanne”. I was
shattered.
I called both my kids and could barely get the words past
my lips. I was in the Lunder 10 waiting room and people were looking at me
sobbing. I’m sure this scene had played out her many times in this room.
Jason came straight in, and Julie and Jack
began the trip back from Lake George. I urged them to drive carefully. We were
all with Joanne late into that evening.
On Saturday a neurosurgeon came down to
examine Joanne. He told us there was nothing they could do as Joanne’s platelet
count was so low. Joanne would receive fourteen bags of platelets over the next
two days; however, her numbers did not improve.
On Sunday Jason
and Jess came to the hospital to be with Joanne. I took Gabe and Elise to the
esplanade on the Charles so their parents could have time with their mom. Julie
was with them throughout the afternoon. Julie and Jack left that night and
drove their kids home to Connecticut. I went home to Townsend that night
exhausted and packed to stay at my sister Carol’s condo in Braintree so to be
close to the hospital.
Monday August 21 was Benjamins and Grammys birthday. Joanne had told Julie “That
boy needs to have a birthday”. She also told me to get flowers for her mom who
was turning 93.
That was Joanne, always thinking and celebrating her family even when being so
sick. Dr. Hock came to see Joanne that morning and asked Joanne if she had any
fight left in her. I was taken back by the question. Though very weak Joanne
said she wanted to get to a stem cell transplant. Dr Hock just looked at us
surprised. When he left Joanne’s nurse, Holly, took me aside. She said that it
was very unfair for the doctor to put you on the spot with a question like
that. Once again, I was sobbing and Holly said it was alright to let Joanne go.
She said Joanne had been through a lot and sometimes the brave thing to do is
let her go. Holly knew leukemia was winning this battle.
Joanne would sleep most of the day and when she would
wake would seem confused and was asking for Jason. The doctors were concerned
about blood in her stool and that she was bleeding internally. Early that
evening the resident overseeing Joanne came to the room and asked if Joanne had
a DNR (do not resuscitate order) in place. I told her we had not discussed it,
and I would need to talk to my family. There was obviously great concern about
Joanne’s condition. I stayed with Joanne late into the evening. I spoke with
the night nurse before I left and asked her to call me if there is any change.
She offered to let me say but I was exhausted and needed to sleep in a bed. She
told me she would call if there was any change. I slept that evening at my sister’s
condo in Braintree.
At five thirty in the morning on August 22 my phone rang,
it was the night doctor on Lunder 10.
He told me
Joanne had a rough night and was on oxygen and he wanted me to be aware. I
thanked him and called Joanne’s brother Joe, Jason and Julie. When I spoke to
Julie her mind was going one hundred miles per hour processing all the things
we for Joanne. She wanted to know why the platelets weren’t working and she was
planning to get the psychology people involved again. She was determined to get
her mom through this crisis.
I listened and gently told her that the doctor did not sound positive and told
her I would see her soon at the hospital.
When I arrived at the hospital, I was met by Dr Song who
told me Joanne would not be able to receive any more platelets as she had
received as much as allowed and that she was showing no improvement. She also
was taken off all liquids and solids as she was bleeding internally. He
explained there was not much more they could do for my wife.
At ten that morning there was a meeting in
front of Joanne’s room on Lunder 10. It was a repeat of the meeting Julie, and
I had witnessed the first day Joanne arrived at MGH.
Dr Hock the
oncologist was there, along with Dr Song, Joanne’s nurse, the head nurse and
the social worker named Eric. Julie and I listened as they described Joanne’s
condition as dire and it was time to decide if we wanted to continue care. Dr
Hock explained that Joanne had leukemia in her brain and was bleeding
internally. There was little or no hope for recovery. They explained that
continuing would just mean more suffering for Joanne.
We entered the
room to talk to Joanne. She was fading in and out of consciousness. I was at
Joannes side holding her hand. Dr Hock awkwardly addressed Joanne and said there
was nothing more they could do and little hope of recovery, did she want to go
on. She did not answer, he then said you look tired, I will let Paul who is her
proxy make the decision. Julie and the nurse began talking quietly when the
nurse said Dr Hock, please ask Joanne the question again. Julie pointed at Eric,
the social worker we met the first day and said, mom, do you know who this is,
Joanne briefly opened her eyes and said in the softest of voices, Eric. Dr Hock repeated the question to Joanne, and
she softly replied, “I don’t want to die”. It was a devastating and
heartbreaking moment. Joanne slipped back unconsciousness. I looked at Julie
and she shook her head, and I reluctantly said, “she’s had enough”.
Dr Hock explained that they would do
everything they could to keep Joanne comfortable.
Joanne was
immediately removed from all IV’s medications and oxygen. A narcotic pump was
brought to her room and connected to her PICC line. Julie, Jason, her brother
Joe and I were with her. The room that had been so busy with medical activity
was now quiet except for Joanne’s breathing. She would briefly wake for short
periods of time and ask for Jason or her brother go unconsciousness.
The nurses
brought in food and pillows and blankets. The nurse explained that if Joanne’s
breathing started to become rapid or increased to call her as that could
indicate she was in discomfort.
In that case they would increase the
medication. The oncologist, resident and fellow visited her room to wish us
well. Eric, the wonderful social worker that Joanne met on her first day at MGH
visited and talked to us for some time. He told us how impressed he was with
Joanne and her loving family. Dr MacAfee, the head of the stem cell transplant
department visited the room and told us how much he liked Joanne. I told him
though she never made it to transplant, nobody tried harder. He said he knew
that to be true. When he left the room Joanne’s nurse said, wow that doesn’t
happen very often. Your wife made quite an impression. She really did, Joanne
showed nothing but kindness and gratitude to her caregivers. On Tuesday I
texted Joannes friends to let them know she was in her final hours on earth.
One of her lifelong best friends, Patty Zube, called me. She said she was in
Canada but booking a flight to Boston to be with Joanne. We told her not to
come and that Joanne may not be here when she arrived. We told her we would put
the phone to Joanne’s ear, and she could talk to her. When Patty began speaking
Joanne’s body suddenly flinched and then relaxed. It was the last reaction we
saw out of Joanne. The last two nights Joanne had a wonderful and compassionate
nurse named Meghan. She brought us much comfort and would fix Joannes pillow
and tuck her in as she would any patient. Julie and I would sleep those nights
in Joanne’s hospital room taking turns holding her hand.
Julie, Jason and I sat with Joanne all day
Wednesday. Although she was still breathing, we were pretty sure she was gone.
At around five that evening Jason said he was going to the cafeteria to get a
bite to eat. I told Julie I was going to visit the Healing Garden on the eighth
floor of the MGH Yankee building. The healing garden is a beautiful garden in
the roof of the hospital building. It is a spot where patients and visitors can
go to reflect. It has a beautiful view of Boston and the Charles River. I
thought in disbelief how it had been seventy-four days since we first arrived
at MGH. I reflected on the last eight months and how the wonderful life we knew
had suddenly been ripped from us. I thought about my beautiful wife and sobbed.
I prayed to a God that I don’t understand. I said please God, take my wife
home. Then I said one of the first prayers I learned as a child, the Our
Father.
Around 6 PM that evening a hospital chaplain stopped by.
She was a very pleasant woman who consoled us and asked us to tell her about
Joanne.
We sat around
Joanne’s bed and told stories of what a wonderful woman she was. Her love of
her kids and grandkids. Her dedication to her parents. I told how I could not
have had a better wife and I everything I achieved in my life was due to her
unconditional live. She asked if she could say a prayer and we said of course.
Jason went home
to his family sometime after eight. Julie and I settled for the night listening
to the metronome pattern of Joanne’s breathing. The wonderful nurse watched
Joanne throughout the night and tucked her and fixed her pillow as though she
was a conscious patient. Julie and I dozed off and on throughout the night. I
sat next to my beautiful wife holding her hand.
I suddenly awoke sometime after three to silence. I
quickly looked over and saw nurse Meghan listening to Joannes' heart with a
stethoscope. Julie jumped to her mother’s side. Is she gone I asked, the sweet Meghan
looked up at us with tears in her eyes and said “yes, I need to call the doctor”.
At 3:20 AM on August 24, 2023, my beautiful wife and
loving mother of Jason and Julie and doting grandmother of Gabe, Clara,
Benjamin and Elise had completed her earthly journey and had gone to heaven.
Julie and I embraced and hugged.
Heartbreak.
EPILOGUE
Our beloved Joanne had a wake on August 30 in Townsend MA.
We were overwhelmed by the number of people that turned out to pay their
condolences.
Joanne had touched so many lives in a positive way.
Joanne’s wonderful physical therapist at MGH, Jess, drove all the way from Quincy
MA to be with our family. She will forever be a special person in our hearts.
On August 31 we held a Celebration of Life in Groton MA. It
was a joyous affair where Joanne’s friends and family shared stories and recollections
of our beautiful wife and mother. We laughed, we cried, we sang, we prayed, and
we honored her wonderful life. We know that Joanne was smiling down.
Heartbreak has been replaced with grief but our gratitude
for Joanne’s life has given us the strength to move forward.
What happened to our lives starting in January of 2023 was certainly
unimaginable. I truly felt powerless in the face of the disease. But the fifty-five
years I spent with Joanne were filled with love and joy.
Throughout the years Joanne and I would love to stop in our daily live to dance, often to the embarrassment of our kids.
One of our favorites was a Van Morrison who sang.
Have I told you lately that I love you?
Have I told you there's no one else above you?
You Take away all my sadness, fill my life with gladness
Ease my troubles, that's what you do,
You ease my troubles that’s what you do.
I love you, Joanne.
posted by pbeau @ 7:23 AM
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