Charles’s Story

Site created on June 18, 2018

Thanks for checking out our CaringBridge website.  Kevin and I will use it to keep friends and family updated in one place.  We truly appreciate your support and words of hope and encouragement. 

Nothing prepares you for the pain of seeing your child suffering and hearing the words cancer associated with his condition.  Last Tuesday, June 12, I met with oncologists at Children's Hospital in Colorado.  I thought blood cancers had been ruled out (we'd done two blood draws in the past few months and had been told so much); so, my expectation was that they might be able to shed some light on Charles' health issues and we'd then schedule an appointment with a rheumatologist to get to the bottom of his pain.  

It started back in mid to late February 2018, when we first noticed a bump behind his right ear.  It seemed to go away, but was then followed by a bump on the back right side of his head.  We assumed that it was from a collision with a granite counter while running around with friends.  A few weeks later, the bump was still there.  So I took Charles to the doctor and an X-Ray was ordered.  The results were not too alarming - calcification after a collision can take up to 6-12 months to resolve.  

Then, in April, Charles started to complain of pain in his right leg.  Some days were so severe that he wouldn't walk.  We went back to the doctor's, who ordered a blood draw and an X-Ray of his leg.  After anxiously waiting, we heard back that evening.  The blood draw revealed inflammation and elevated levels of white blood cells; doctors noted that this would be expected with a virus and ruled out blood cancers.  The following week we X-Rayed Charles' leg and had an ultra sound of his bump, which was still present and just as big.  No fracture; doctors diagnosed it as toxic synovitis (hip pain children can develop after a virus that can cause limping).  The ultra sound revealed little more about the bump, so we were sent to a surgeon at Children's Hospital, Dr. Roach.  Around this time, Charles fell on his right cheek while wrapped in a towel after swim practice.  A bump appeared there shortly after.  We also noticed a bump on the front left side of his head.  

Upon first inspection, Dr. Roach noted that the head bumps likely were osteomas (bone growths) and explained that lymph nodes could become inflamed with viruses.  He advised to keep an eye on these bumps and stated he would order an MRI or CT Scan should concerns persists.  Fast forward to the end of May, after a stomach virus over Memorial Day Weekend, along with his right leg pain, Charles starts to complain of left arm pain.  By Saturday June 2, the pain is so bad that he can't straighten his arm.  Kevin takes him to the doctor (I was oot until that evening celebrating Camille defending her thesis), then goes (with all three kids) to the ER at Children's Hospital.  Charles' arm is X-Rayed and they draw blood.  He is diagnosed with a broken arm, and Kevin is given the same analysis of the blood draw - inflammation and elevated white blood cells consistent with a virus but no concern for blood cancer.  This latest break, lack of progress in his bumps and an additional bump behind his left ear leads us to work with his pediatrician Dr. Katie Dickinson to schedule additional appointments at Children's Hospital.

Wednesday June 6, we see Dr. Roach again.  He notes the additional bump behind his ear and states that he would like to remove the bumps behind his ears to have them biopsied.  He explains that the bumps on his head are outside of his expertise - neurosurgery or ortho would be better suited to analyze those.  He also notes his concern at messing with the bump on his cheek, near the parotid gland, which can involve too many nerves.  Dr. Roach states that he would like to wait until our appointment with ortho before scheduling the biopsy in the event ortho would like to biopsy any other mass.  That same day, we also see someone from ortho to analyze Charles' arm (another appointment was scheduled with a someone more specialized to analyze the bumps on his head).  The orthopedic doc walks in and immediately states that based on the X-Rays, the arm is not broken.  It just shows signs of inflammation.  

Of note, our sweet boy was born with only one kidney.  He has one existing super kidney that is functioning properly.  But, along with no contact sports, we've been told to avoid giving Charles ibuprofen.  So, by this point, he's been pretty uncomfortable for a good part of the past couple of months.  

Dr. Katie also set up an appointment with hematologists, assuring me that this is to gain any insight on his condition and that they still don't think that it is a blood cancer.  That brings us back to Tuesday June 12.  Charles, Eloise and I meet with Dr. Stokes and Dr. Hayashi at Children's Hospital.  After going through his symptoms, looking at the results of his CBC, she notes that it sounds like it could be one of a number of blood cancers or an "almost" cancer.  She says she'd like to order a MRI to see what it reveals about the bumps and analyze possible other lesions inside his head.  And she agrees with Dr. Roach, that we should biopsy the bumps after ortho has a chance to chime in.  

In shock at the C word and the concern that Charles might have lesions inside his head, I move on to our ortho appointment.  Only, as I check in, I'm told the appointment was cancelled.  I speak with the scheduler, never a nurse or doctor, who tells me that the appointment was cancelled because the doctor analyzed the X-Rays and he agreed that nothing was broken, so no follow up was necessary.  In vain, I try to explain that this appointment had nothing to do with Charles' arm; that it was specifically scheduled as a separate appointment to analyze the bumps on his head.  And that we are waiting for input from an orthopedist to schedule a biopsy, all the more concerning after my meeting with hematology.  The scheduler tells me that ortho would have nothing to do with anything above the neck and sends me on my way.  [If you can't tell, this was a rather frustrating experience.]    

Thankfully, we're able to schedule the MRI pretty quickly - Friday June 15 at 4pm.  I don't know that the process of seeing my little boy be put to sleep will every get any easier.  He was a champ as he woke up.  That evening, we get the dreaded call from Dr. Stokes.  

Up to then, I still was hanging on to the hope that it could be something else.  I run to the third floor, where Kevin was installing Charles' air conditioning unit (the third floor gets pretty hot in the summer) and put Dr. Stokes on speaker.  She starts with the positive - Charles' brain is intact.  Then explains that, while a biopsy is needed to confirm diagnosis, they are pretty certain that it is cancer, likely Lymphoma but it could be another cancer.  She explains that a number of additional masses were identified, and that the MRI revealed inflammation behind his right eye, which we later learn can happen when the cancer has spread through the spinal fluid.  In tears and shock, I spaced out for a good part of that call until we heard Charles and Chloe run upstairs.  None the wiser, our happy boy and his little sister were coming up for their bed time story.  With his smiling face and a lot of deep breaths, we'll get through this hard chapter.

Today, June 18, Dr. Roach removed the two masses behind each of his ears to be biopsied.  Dr, Stokes and Dr. Hayashi performed a spinal tap and extracted some bone marrow.  We should get a diagnosis by the end of the week, hopefully earlier.           

Newest Update

The end is near!!

Journal entry by Alex Muesenfechter —

 June 19, 2021 ... What a day! 

 

It's been a while since I wrote an entry.  And that is generally good news.  Charles' treatment has been going relatively smoothly.  We did follow doctors' recommendations to lessen his chemo - going in every three months, as opposed to every month, for a lumbar puncture to administer methotrexate (a type of chemo), vincristine (another chemo) via his port, and steroids.  What a difference that made!!  Having five days of steroids every month typically meant that he hardly had time to get back to his old self before going right back in.  A longer break allowed him time to feel like himself again, and the effects of the steroids hasn't seemed quite as bad.

 

We also added a fourth to our crew, Leo, born in February of last year.  Throw COVID into the mix and having all four kids home more, it's been hard to sit down at a computer!  Charles was hospitalized once more, in March of 2020, soon after Leo's arrival and right as COVID officially made its way to the Denver area - he was actually still admitted when the first case was reported and they changed hospital procedures.  Those included the "no sibling rule", meaning Kevin had to watch the girls (babies are allowed in) during his appointments, and a requirement that he take a COVID test prior to all of his lumbar punctures.  Thankfully COVID has not affected the oncology kids more harshly than others.  And since Charles has been staying strong with his counts on the upper limit, we ultimately decided to send him back to in-person school.  The upside to COVID precautions is that we never had to go to the ER over the past school year!  He stayed home with a runny nose and cough a few times, but no fevers (a fever over 101/lasting fever over 100 requires a visit to the hospital)!   

Back to today.  Today not only marks the three-year mark from Charles’ official B-Cell Acute Lymphoblastic Leukemia diagnosis, but doctors removed his port and he had his last lumbar puncture yesterday. 

 

A port is a small device that was implanted under Charles’ skin on the upper left side of his chest when he was first diagnosed.  It was used to easily access his bloodstream to draw blood and infuse chemotherapy over the past three years. 

 

It also was his last lumbar puncture (LP).  Charles has had chemo injected into his spinal fluid throughout his treatment, so it’s amazing that this was the last LP!  Since it is his last LP and the last time vincristine (a type of chemo) needed to be injected through his port, his doctors said that they could remove his port at the same time.  Removing the port reduces the risk of infection.  He’ll continue with oral chemo until August 24, when the real celebration will take place.

 

Charles seemed pretty pumped; saying “by tomorrow afternoon, I won’t have a port!”, “when I come back, I won’t have my port!”.  The same wasn’t true a few months ago, when he first learned they’d be taking it out in June.  He doesn’t remember not having a port.  Not having leukemia.  It’s such a part of his identity and, I think, the realization that his treatment was coming to an end was a bit of a shock. 

 

It’s understandable.  It is something that has set him apart; he’s raised money for leukemia, participated in light the night, talked to his class about his diagnosis and treatment every year.  It’s part of him.  We talked about the fact that he always will be a cancer survivor, and that he can continue to talk about leukemia, raise money for LLS, and help others going through what he went through.  He now seems to accept and celebrate the end of this chapter of his life.

 

We are so glad to know that in a couple of months, he won’t be ingesting such harsh drugs on a daily basis.  They are life-saving drugs, and we are eternally grateful to live in a time where Charles can benefit from chemotherapy, but his little body has gone through a lot and it’ll be nice to get him off medication.

 

To celebrate, Charles requested Pizzeria Locale (to order his own as they make individual pizzas), with a movie of his choice (Luca).  That was after his customary post-op cookie; I always picked up a cookie from the hospital coffee shop for him to have when he woke up after his lumbar procedure.  Since Kevin was able to join, he ended up with three cookies yesterday ... And tonight, steaks!  The boy likes to eat, especially while on steroids.  (This also marks the last time he'll take steroids during his treatment. Yay!)

 

We are so thankful that my mom came in town to watch the other three kids and celebrate with us.  Her help has been invaluable throughout this journey.  

It is a good day! 

Thank you for your support throughout this journey.  We'll check back in at the end of treatment in August!

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