Our Journey

Michael and I had always commented on how lucky we were that Johanna was pretty much always healthy.
She had mild seasonal asthma, few colds, hardly ever was sick to speak of, and has never had to go to a hospital for anything.
The only health complaint I ever had for her pediatrician began a few months before the nightmare - constipation. She was treated with Miralax, prune juice, suppositories and enemas to battle that problem and ease her discomfort, poor baby…
She would throw up occasionally – we were told because the constipation was blocking her up – and always went places with her red throw-up bucket in tow.
On March 17, 2007, Johanna competed in a Tai-Kwon-Do Tournament and won a gold medal with her red bucket by her side…

She joined the Little League in late April and was the only girl on her little Red Sox team. They had team pictures done on Monday night, May 7, 2007. Johanna was fine that day, and her picture was one of a seemingly healthy, vivacious little girl!
The following night, she began throwing up steadily – Michael and I thought it was due to the Noro-Virus that was rapidly making its way around, because she had been playing with a neighbor on May 6, 2007 whose school closed due to the Noro-Virus; it’s highly contagious, and seemed to be the best reason for this “illness” at the time…
On Wednesday before Mother’s Day, 2007, Johanna began vomiting a great deal –I kept her home from school that day…she quickly became weak, dehydrated and developed a terrible pain in her stomach.
I took her to her pediatrician’s office – she was given a painful shot in her thigh (which she has never forgotten) to suppress the nausea – they had been seeing many cases of the Noro-Virus and believed she might have that…she rested comfortably through Thursday.
She returned to school Friday and had a great day - had reptiles at school - very cool!
During Friday night into Saturday morning, Johanna started feeling terrible again with all the same symptoms. The vomiting continued every 20 minutes…
By Saturday afternoon, Johanna was very weak and showed no signs of improving – even tiny sips of water were vomited right back up; she was becoming de-hydrated again.
Her pediatrician urged us to take her to an emergency room.
We arrived at Children’s Hospital Boston at about 8:30pm Saturday evening. It was utterly mobbed with patients – as she vomited and vomited, we grew very impatient and were leaving to go to another hospital – I believe an angel was working on our side, because the nurse took us in immediately.
They gave her a belly x-ray, and inserted an IV for hydration.
By 3am Sunday, she perked up and we were sent home with a diagnosis of extreme constipation and possibly a touch of a virus.
She slept well, woke about 10am and gave me beautiful Mother’s Day cards and gifts; shortly thereafter, the vomiting began in earnest again – she very quickly became lethargic.
Not wanting to waste time, we hurried back to Children’s Hospital.
We were admitted on Mother’s Day; her diagnosis was again: severe/extreme constipation.
And so began a weeklong treatment for extreme constipation (they called it fecal impaction).

Johanna bravely endured IV's, nasty laxatives, 2 regular enemas, 2 nastier enemas, many blood tests, x-rays, suppositories, a procedure to insert a tube (NG tube) through her nose into her stomach so that she could take 3 liters of the Go-Lightly drink you take for a colonoscopy. All of which had no effect, and she still continued throwing up....including her NG Tube. Her belly size and pain increased greatly – she moaned and wailed in agony.
An emergency colonoscopy was set for the following Saturday May 19th, as her doctors became extremely concerned and decided to take a closer look by giving her a colonoscopy under anesthesia.
We promised our frightened baby that she would go to sleep, but would wake up feeling all better – just be brave…We kissed our angel goodbye and told her she would soon be all better – that her doctors needed to clear her intestines out.
Little did we know of the evil tumor growing inside her, and that this monster would try to take our angel - unless a medical and spiritual miracle took place.

We waited and waited for word that all was fine…but…then, our “normal” world came crashing down…
I must admit, I don’t really remember much with great clarity from the moment they wheeled my baby away for her colonoscopy to days later in the ICU…
During the period before we knew it was a cancer diagnosis, her doctors came out to speak with us. They were very gently trying to tell us very bad news – that something wasn’t right, but that they needed permission to do emergency biopsies and CAT scans to determine exactly what was going on inside our baby. They found her intestines to be relatively clear. The diagnosis of severe constipation was incorrect…they felt a mass pressing against her intestine from the outside of it…
The word “mass” put Michael and me into another realm altogether. I began shaking all over…I couldn’t see or hear very well, shock and fear were quickly taking over me…I remember staring at Michael…my thought immediately was that his first wife had died of leukemia, now his daughter has “a mass” – this cannot be happening.
I somehow managed to call my sister, and asked her to come to the hospital - something bad was happening. Even though she was a good 45 minutes away, she was at my side within 10 minutes.
Michael called his brother who also appeared in an instant…

A CAT Scan, Biopsies, Lumbar Punch, Bone Marrow Aspirate and other tests needed to be done immediately to confirm their worst suspicions.
Based upon what they preliminarily saw, her doctors told us they suspected “Burkitt’s Lymphoma” – extremely aggressive, and extremely rare – but, curable in some patients depending on many factors, including the staging….I do remember crying hysterically, wailing, and wanting to wake from this nightmare of biblical proportions.
With Burkitt’s Lymphoma, hours cannot be wasted; in order to have a fighting chance, Johanna would need to begin heavy chemotherapy as soon as humanly possible; her doctors told us at this point she only had 7- 10 days to live!…the chemotherapy simply had to work.
Once their suspicions were confirmed from all the tests, we would quickly meet with a team of doctors to discuss her “protocol”….
The CAT scans showed that this monster had enveloped her entire insides, wrapped around her intestines, uterus, lungs (collapsed one), virtually every organ was being strangled…our poor beautiful baby needed to stay strong and fight this killer-cancer.
Once Sporadic Burkitt's Lymphoma is confirmed, it is immediately “staged”.
Sadly, once it is discovered it has been progressing fast enough to become very dangerous, very quickly – usually staged as III.
It can very quickly expand into the bone marrow and central nervous system, at which time it would be upgraded to stage IV, the highest (worst) staging.
Once it gets into the central nervous system and spinal fluid, the treatment options become very problematic. Experimental trials become the primary option.
We were told that Johanna's cancer had slightly expanded into her bone marrow, making her a stage IV, but was caught before moving to her central nervous system.
They also tested her spinal fluid for any signs of cancer in her central nervous system; every spinal fluid test came back completely clear.
A port-a-cath was inserted in her upper chest wall (the space between your collarbone and your breast) to make receiving the chemotherapy easier and more comfortable. Tubes and needles fits right into the (numbed) port, so all you feel is the stick—not the poking, prodding, and false tries that can cause many tears. Chemotherapy and medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body, and having blood drawn for tests can be done through the port, decreasing the number of times you need to have a vein "stuck.

Johanna was placed in intensive care and after 2 days, her breathing and NG tube were finally removed.
She recognized her Mama and Dada and lots of other visitors and the first thing she questioned was “WHEN am I going to get OUT of this hospital???” She also told me "I was yelling WHAT??? a million times and NOBODY could hear me” (because I couldn't wake up). She also asked the nurse, "Could I have a STICKER??" Cute one, whenever she has a pediatrician appointment, she is always given a sticker when leaving – this was her subtle way of telling them that she was ready to go home!
When she saw her new “port”, she became very agitated, scared, and cried millions of tears….how do you explain to an innocent child what’s happening and why?
On Monday May 21, 2007 Johanna began her first of five rounds of chemotherapy...chemo would be administered through her port-a-cath for 4-5 days, and she would also receive chemo in her spine through a spinal tap/lumbar punch at the beginning and end of each chemo round.
Her chemotherapy consisted of Vincristine, Cyclophosphomide, Methotrexate, Doxorubicin, and Cytarabine (Ara-C), with Leukovorin, Hydrocortisone and Prednisone accompanying each…lots and lots of other medicines, the list goes on and on….
Strange, I hated giving her any medicines at home before this nightmare began, but had to submit and allow seemingly lethal doses of chemicals to be placed in her spine and throughout every vein in her small little body…
Johanna was sent to the 6th floor-north (oncology unit) of Children’s Hospital in the evening of May 22, 2007 – this would become our home-away-from-home for a long time….
We experienced many highs and lows through Johanna’s journey – she would be deathly ill one minute and bouncing around at a birthday party the next! There were so many tears shed by Johanna, and by us, you could fill an ocean.
Yet, through it all, our little child had more strength than the two of us – HOPE & determination guided her through the worst of it – she simply wanted to get back to being a little kid!

Because this cancer expands through the entire lymph node system, surgery is not really a treatment option.
Radiation has not shown to be an effective treatment either.
The good news about this form of Burkitt's is that, with aggressive Chemotherapy treatments, this cancer dies as fast as it grows.
It recent years they have developed an aggressive Chemo "cocktail" of several Chemo drugs at very high doses.
This has been successful is about 70% of those with stage IV Burkitt's, as long as it is not expanded into the central nervous system.
It appeared that Johanna was in that 70%.
We were told that Johanna would receive more Chemo in four months than most leukemia patients receive over two years…
And so, it began -
After her first round (a week’s worth) of Chemo, Johanna had a CAT Scan to see how well her little body had responded. Her doctor came to speak with us that night – they originally wanted to see her tumors reduce by at least 20%, but instead, they saw a 100% reduction!! To all of us, this was nothing short of a miracle!!  I cannot even begin to describe the emotions that ran through Michael & I at that moment!       

After treatment, the news is also good.
Once in remission, Burkitt's rarely returns, and almost never after two years of remission.
Further, since Burkitt's is not connected to any other diseases, there is no greater likelihood of other diseases or complications.
Once Burkitt's is beaten, there is every expectation of living a normal and healthy life without adjustments or complications.
However, we still worry each day that a secondary cancer might develop from all her heavy doses of chemo-therapy – nice to live with that possibility…

The greatest blessings we have:
We live close to Children’s Hospital Boston – the best facility in the world for children
We have a wonderful pediatrician who deeply cares
We have an extensive list of family, friends and prayerlines who have been praying non-stop for Johanna
We have a quality team of Oncologists and nurses – all who have been so attentive, caring and willing to discuss and explain every treatment and all options
And above all, a loving God that has used all these people to help heal Johanna and rid her of this terrible monster.

Please Hope & Pray for:
---Continued wisdom by the doctors & researchers in treating many, many other children.
---All the families & loved ones affected by cancer.
---The continued strength as Johanna continues to heal and grow.
---All the many other families on the 6th floor (oncology ward) at Children’s Hospital who live each day in their own private hell.
---All the beautiful little souls of the children who fought a brave battle with their disease and have gone to heaven.


Emotionally yours,

Carol (aka; Mama)