Day +39

John is still inpatient.  It looks like he’ll get discharged tomorrow.  

All in all this past week has been challenging.  But, John did enjoy one good day.  This past Saturday he felt “good” (all things considered).  He sat up in bed, went for a walk, watched TV on his iPad and even engaged us in conversation.  For a moment, I felt like the elephant, that’s been sitting on my chest for the last few months, finally got up.  It was such a great feeling seeing him alert and participating in the events of the day.  I really thought he was turning the corner …. Then came Sunday, the return of nausea.

Our setbacks:

The nausea has returned with a vengeance.  We are back on round-the -clock anti-nausea drugs and we can’t seem to get it under control.  They offer him only partial relief.  So, he’s either knocked out cold from the medications or awake and nauseous.  Why is he so nauseated again?  It could be a virus although he has tested negative for a slew of viruses/infections (but there are always those viruses that they can’t test for).  It could be post radiation nausea.  It could be related to the Dilaudid wean we just started (unlikely because we are taking it very slowly).  Or, It could be a culmination of all of these things.    

He hasn’t drank or eaten in almost 50 days.  He is still on feeds through his NG tube.  We really need him to show some interest in drinking/eating.  It’s important he gets his gut working. 

Spleen is still consuming his platelets and neutrophils.   

His White Blood Cell count has plateaued.  It has yet to take off and achieve “normal” levels.  We’ve used G-CSF (stem cell mobilizer) for over a month trying to stimulate his cells with limited success.  The plan is to give John a stem cell “boost”.  I’ll start my G-CSF series shots later this week (6 days) and we’ll repeat the stem cell donation process the beginning of next week.  I’ll donate next Tuesday & Wednesday, Jan. 6th & 7th and he’ll receive those cells next Wednesday & Thursday, Jan. 7th and 8th.  We pray this helps not only his lagging WBC count but also his liver (stem cells flowing through it may help regenerate some of the failing cells) and spleen. 

Our progress:

His respiratory issues are totally resolved, no oxygen required therefore I stopped my search for a Sherpa to carry John’s oxygen tank around for me.  He’s lost over 12 pounds this week (30 pounds total).  The weight just dropped off, relieving the fullness in his stomach and allowing his lungs to expand. The doctors think this was due to his organs and body starting to heal. Finally, he’s not short of breath!

Bilirubin is lower so his liver is a little happier, still compromised but happier. 

His CRP (C Reactive Protein) is down.  Shows that there is less inflammation in John’s body.

Visually he looks really good(compared to a few weeks ago).  

Pending:

Chimerism from this week is not back yet.  

Please continue to pray for John’s complete recovery: 100% Chimerism, continued MRD Negative, & for the cell boost to improve his cell count recovery and rejuvenate his Liver & Spleen functions.

Love, Kathy

 

 

Day +34 Christmas Day

John is in REMISSION.  Results from his most recent peripheral blood MRD test show that he is MRD NEGATIVE 0.000 (there are no leukemia cells present at that sensitivity)!  Woo Hoo! Typically the test is taken from a sample of bone marrow but John is still too compromised for sedation.  As he starts to recover, a follow up bone marrow test, we pray, will confirm his remission. 

His chimersim from last week was 100% (100% donor cells).  However this week is 99-100%; hematology was not able to differentiate if the other 1% was donor (me) or patient (John).  As always the chimerism will be drawn again on Monday and if the results are the same, a “boost” of my cells may be necessary.  I pray that is NOT the case and he is a very strong 100% donor next week.  Although a 100% chimerism is not a guarantee that he won’t relapse – having a 100% donor immune system gives him the best chance at remaining cancer free.

We have so much to celebrate & be thankful for!  But, still so much to be concerned about.  We are not only fighting cancer we are fighting very serious liver damage.

John’s liver is extremely compromised and it is causing a multitude of obstacles in John’s recovery.  Years of therapy have caused severe liver scarring.  The blood flow to his liver is backed up, increasing the pressure within the large portal vein that carries blood to his liver. This pressure is forcing the blood to seek alternate pathways through smaller veins, like those in the lowest part of his esophagus causing John to have esophageal varices (the thin-walled veins in his esophagus are ballooned with the added blood; which can rupture and bleed).  After consulting with an outside GI doctor, John was placed on a medication that helps with portal vein hypertension (it doesn’t fix it and has not alleviated all of symptoms).

The obstructed flow of blood through his liver’s portal vein is also causing John’s spleen to enlarge.  His enlarged spleen is trapping his platelets.  The result, the platelet and blood cell count in his bloodstream continue to fall dramatically.  Due to entrapment, his spleen grows and grows in size, and as it grows, it is trapping more and more blood cells and platelets.  These blood cells and platelets are clogging his spleen and interfering with its normal function.   His new marrow is successfully producing blood products but his spleen is hoarding them, not allowing them to flow into the bloodstream therefore his blood counts are not able to fully recover post transplant - worrisome.  So, what can we do in the short term to help?

After much consideration his medical team recommended an additional 6-10 session of radiation to the spleen.  The hope is that the radiation will improve the function of the spleen.  As of today, he has completed 6 sessions and there has been little to no improvement.  We will give it a few more days then we’ll need to discuss the possibility of removing his spleen (this is not ideal because it would increase the pressure in his portal vein).  

Because of his liver damage he also continues to experience ascites, fluid build up between the lining of his abdomen and his organs.  It is managed for the most part with daily diuretics (but that is very hard on his kidneys – and we don’t want to add kidney damage to the mix).  However quite a bit of fluid continues to pool around his lungs; making it difficult for him to take deep breaths.  Because he can’t take deep breaths his alveoli (the tiny sacs within the lungs that allow oxygen and carbon dioxide to move between the lungs and bloodstream) are not fully open.  He requires oxygen throughout the day to ease his breathing burden.  Various breathing exercises are helping but the fluid buildup and lack of mobility are preventing him from having a full pulmonary recovery.

So, if you haven’t noticed already the liver has a systemic effect – reeking havoc.  There is no quick fix for John’s liver.  Only time will tell if the stem cells from his transplant will help heal/regenerate what few healthy cells he has left in his liver.  They may or may not compensate for the damaged cells.  Unfortunately time is not on our side.   We are investigating other options, temporary options (possibly a shunt).  It is also possible in the future John will require a liver transplant – I would be the donor since we now share the same DNA. 

Last week we were discharged from the transplant unit and headed out into the “outpatient” world.  It was ridiculously overwhelming.  I say ridiculous because if we didn’t laugh at ourselves carrying a portable hospital on our backs we would have cried.       

Every night before bed, Rich, Bella and I sit at the kitchen table and draw up the next day’s 30+ syringes of medications (so we would have the entire day’s medication with us at the hospital).  This entails Bella making the labels (medication name, dose & time it needed to be administered) and placing them on the right size syringe – Rich & I organizing the pills, cutting them, crushing them and melting them in sterile water then drawing them up into the correct syringe (to place in his NG tube).  Some need to be refrigerated so they are placed in a “to-go” cooler along with his outpatient IV meds that are in eclipse balls that we administer directly into his central line.  We double and triple check our work so no mistakes are made (we are exhausted). 

Then Bella, Rich or I get John’s feeds ready for the night (pouring the protein formula into a bag, priming it, clearing the pump and attaching it to John’s NG tube).  

We change the batteries in his food pump, his hydration pump and his Dilaudid pump.  They are all attached to a pole that we can push around the Target House/hospital. 

Then off to bed, not to sleep.  John is up at the very least 6 times a night.  No one is getting any rest.  

Next I pack up the hospital supplies we need to have with us throughout the day, in a very oversized and overstuffed backpack – it looks like I’m climbing Mt. Everest.  Half the time I can’t even carry it because I’m pushing John’s wheelchair and maneuvering the pole – trying to get from appointment to appointment.   Little Bella carries her school backpack and the hospital supplies backpack.  I call her my little Sherpa.  Again if it weren’t such a funny site we’d be crying.

Since John requires oxygen (and there is no physical way we can carry around one more thing let alone a tank of oxygen) we race from place to place finding an oxygen hookup.  Its very stressful and a huge problem.  

We spend the better part of 8-10 hours a day in the medicine room getting IV medications and blood products to support John’s recovery.  That’s after all of our other appointments.  We start our day in the hospital early and end it very late.  By nightfall we are all dragging ourselves into the parking lot.  It’s a true team effort! Thank goodness Rich & Bella are still here.  

There is so much to remember I have to keep a daily spreadsheet of medications, labs, appointments & questions for the doctor.  If it’s not written down I probably won’t remember it.

After four days of endless hours in the hospital and frantic searches for an available oxygen hookup we opted to get readmitted to the transplant floor for at least the holiday weekend.  It will give us a chance to regroup and come up with a much needed and much better outpatient plan!  

Another reason we need to regroup is because we are not familiar and not content with the “team” approach surrounding John’s care.  The transplant doctors/nurses operate as a team.  There isn’t one “go to” doctor responsible for John.  If we have a question during hospital hours we are just supposed to call the clinic and talk to whatever doctor is in the clinic.  If we have a question after hours we are supposed to call the on-call doctor.  WTF!  That’s not going to happen.  Rich, John and I are accustomed to the Dr. Pui & Martha approach – which is, one doctor and one nurse practitioner totally invested in caring for our child, accessible whenever, wherever.  It’s also known as continuity of care!!!!  Caregivers striving for excellence!  After multiple requests, via scathing emails, for a 24/7 contact (that would know every detail about John so we wouldn’t need to reiterate the last 3 years) we found ourselves at a standoff.  We need feel comfortable with John’s “team” and if we can’t find some middle ground then the Hagen’s are going to be a permanent fixture up in the inpatient transplant floor.  

So here we are, inpatient on Christmas Day.  Today was supposed to be John’s first day off-treatment.  We had so many plans for how we were going to celebrate.  It’s heartbreaking to see John where he is vs. where I dreamed he would be.  For this reason, other than celebrating the religious significance of the holiday I’m just trying to get through the day.  Don’t worry; I splurged on gifts for Rich & the kids (Santa also came to see the kids this morning in transplant, bringing some additional amazing gifts).

 

A special thank you for all of the many thoughtful and generous gifts sent to us at the Target House!  (some came without cards so I’m not sure who to thank - sorry)  We appreciate everyone’s kindness and well wishes.

Merry Christmas.  I hope you all have a very blessed day with your families.  

I pray the New Year that is upon us brings renewed Health, Hope and John’s forever cure!  

So I end this post, watching John sleep in a hospital bed, while in my Christmas jammies, sipping my coffee, pretending for a moment that everything is ok. 

Love, Kathy

 

Day +7 through Day +14

More of the same …. 

Mucoscitis continues to be a nightmare!  While its better than it was last week it’s still causing incapacitating pain, nausea, vomiting and diarrhea. 

His overall ickyness persists as well (when I say icky, imagine the worst flu you’ve had).  Every moment takes tremendous effort – things we take for granted like:  sitting up, standing for more than a few seconds & walking a few feet.  He’s exhausted and sleeps most of the day. 

He still requires oxygen.  Respiratory visits him every four hours to help him with breathing exercises.  Sometimes he’s able to perform them sometimes not.  During Dr. Pui’s daily visits he is always quick to remind John that if elephants lie down for too long their lungs will collapse ~ that’s his way of saying it’s important for John get up.  Since John has already experienced a partially collapsed lung we are very sensitive to his advice.    

The NG-tube is proving to be very useful.  John’s daily “feeds” are going well; providing him some much needed nutrition.  And it’s a Godsend for medication delivery.  He will most likely leave the hospital with the NG-tube so I’ve been learning to use and care for it.  With the nurse watching, I change out his bags of formula and give him his medications.  This is just one example of our many caregiver responsibilities.    

John is more lucid, the brain fog is lifting.  He’s had several neurological exams to rule out brain damage.  The exams were upsetting to John – he realized he wasn’t answering the doctor’s questions correctly and his eyes would fill with tears.  He’s in there but sometimes he’s just trapped.  Rich & I are still very concerned and we are waiting anxiously to see John’s cognitive abilities return to normal.

The engraftment process has started.  Little by little, every day he has more cells.  The process of engraftment is micromanaged by his transplant team – they want the cells to engraft slow and steady.   His first weekly chimerism test results showed he was 99-100% donor.  It’s an acceptable percentage for now but post-engraftment (next week) he needs to be at 100%.  You may recall, 99% is a failing grade in transplant so we continue to pray next week’s test results will show 100% donor cells.  We don’t want any of John’s cells lingering around!  It’s essential that his entire immune system be replaced; his new immune system is what is going to kill any residual leukemia.  An interesting fact – John doesn’t have the immune system of a 14 day old baby he has NO immune system.  You could equate it to an immune system of a fetus during its second trimester.      

Rich & I are still learning so much about the stem cell transplant process (they really should call it an “immune system” transplant).  It’s a lot of information to absorb.  We are doing our best to stay informed and educate ourselves ~ lots of questions for the doctors and lots of nighttime reading. 

Living at the hospital, inpatient, for the better part of 3 months is exhausting but we are trying to manage our new norm the best we can.  Our daily lives revolve around managing John’s care.  Rich attempts to balance work and being a caregiver – he set up a bedside workstation and  has mastered talking on conferences calls while catching projectile vomit.  Bella mostly hangs out in the Leukemia patient lounge in the main hospital, diligently doing her homework.  (she’s knows all the nurses there and they keep an eye on her).  My day is spent hovering over John, attending to his every need, desperately trying to ease his suffering.  We are surrounded by supporters, nurses and doctors and staff that love and care for our family.   

We are homesick and miss the life we once knew.  But …

“We must be willing to let go of the life we planned so as to have the life that is waiting for us” ~ Joseph Campbell

Please keep sweet John in your prayers. 

Love, Kathy

 

 

 

 

Day +1 through Day +6

I wish I had the energy to post everyday but our days fluctuate between chaos and organized chaos so, I’ll try my best to sum up the last six days for you.

Transplant Recap. 

John has received the following transplant infusions:

Day 0 and Day +1 Hematopoietic stem cells:  the blood cells that give rise to all the other blood cells

Day +2 Memory cells:  T cells that have become "experienced" by having encountered prior infections, cancer, or previous vaccinations.  During a second encounter with an invader, memory T cells can reproduce to mount a faster and stronger immune response than the first time the immune system responded to an invader, such as cancer.  

Day +6 NK Cells:  The human body’s first line of defense against cancer is NK Cells.  NK Cells are white blood cells that scan the body for abnormal cells, destroying them before they can develop into cancer.

Transplant update.

Nausea is mostly under control.  I think we finally found a good cocktail of anti-nausea medications.  It is on a continuously drip into his central line for added comfort. 

Diarrhea is endless.  It’s like nothing he has ever experienced before.  I’m going to leave out the details ~ the diarrhea stories that happen in transplant stay in transplant.    

John seems to drift in and out of consciousness.  He is exhausted.  During this stage of the transplant his body is expending a massive amount of energy.  They equate it to running a marathon every day.

He has weird, vivid dreams, often catching himself mumbling the fantasy aloud.  They are interesting to hear but alarming to witness the toxic effects the medications are having on John’s central nervous system.      

When he’s not mumbling he’s moaning/weeping in his sleep.  It’s heartbreaking to listen to.  We watch the monitors to make sure he’s blood pressure and heart rate are not elevated – telling us if he’s in pain while he sleeps.

Mucositis has begun.  A quick lesson on mucosa - the inner surface of the GI tract is lined by a mucous membrane known as the mucosa which is covered by a thick protective layer of mucous.  As a result of cell death (from his high dose chemotherapy) the mucosal lining is sloughing off, coming out one way or another!  When he vomits it up it looks like bloody boogers wrapped in sheets of his GI tract.  It is a debilitating side effect of the transplant process. 

Pain is endless and unbearable at times, he has nearly passed out from it several times.  Visibly his body shakes from the pain.  He continues to be on a Diluadid (Hydromorphine) pump with access to a push button for extra boosts when needed – which is often. 

A sense of Icky overwhelms John 24/7.  As the cells start to settle into the bone marrow a general awful feeling engulfs him.

We finally gave in to the inevitable, allowing the nurse to insert a NG tube (a tube inserted through the nose and into the abdomen, delivering nutrition/medication directly to the stomach).  John has not eaten anything in weeks and his new cells need nutrition so he has continuous feeds through the “noodle” of predigested formula.  As I mentioned above it’s also used to deliver medication.  With a very raw GI tract, it nearly impossible to swallow pill after pill after pill so, the NG tube elevates that burden from John.  Unfortunately every time he vomits up clumps of mucous and sheets of his GI tract the noodle comes out with it.  We then have to pull it back out his nose and start all over again.  It’s been very distressing and traumatic experience. 

Fevers come and go but the highest fevers are yet to come.  Rich and I have been cautioned that the NK cell infusion will bring on days of fevers that cannot be recorded on a thermometer.      

This process continues to be very taxing on John’s already compromised organs.  Organ failure is a very real possibility and Rich & I agonize over the ability of John’s organs to stand up to this intense process. 

John is to the point where he needs one-on-one nursing.  He is in constant need of medical care.  We are finally finding our rhythm with the nurses up here on transplant and learning to trust their abilities.      

Very rarely do we see signs of John.  He can barely open his eyes let alone show us a familiar smile.  We only hear his voice when he is pleading for mercy.  He lays in bed a shell of what was once a thriving young boy.  Rich and I desperately hang on to a smidgen of hope that he will reemerge. 

The barbaric transplant process and its effects on John is taking its toll on Rich & me; we are struggling to see the light at the end of tunnel especially with the worst days yet to come.  Bella is still eternally hopeful, refusing to believe anything other than that her brother will survive.

With so much heartache I find it difficult to find any joy but on this Thanksgiving Day I am still thankful for so much: the unconditional love and support of our friends, family and community, the doctors and nurses at St. Jude who continue to carry us through this journey, and the blessing of sharing this day John, Bella and Rich. 

I hope you all find time today to reflect on your many blessing.  I also hope you find time to think about John and the many other children that are fighting for their lives. 

Be thankful it’s not your child.    

Kathy

 

 

Transplant Day

Although it is called Day 0, today is a day of infinite hope for John. He received the first of Kathy's stem cells around 4:30 pm. In spite of being very sick with side effects from the conditioning treatments, John tolerated the transplant itself well, showing his trademark Unstoppable Determination! His medical team (including his parents) continues to work on new ways to bring him relief from the unrelenting nausea. and his beloved Dr. Pui checks on him frequently.

If he could be healed by the sheer force of will, John's leukemia would have been gone long ago. The entire Hagen family has been fighting John's battle with unmeasurable amounts of determination, love, faith and hope. Today was no exception as Kathy completed another long stem cell harvest, while Rich took care of John, and Bella rotated between them.

Kathy's initial harvest yesterday did not yield quite as many cells as they had hoped, so she will endure a third harvest tomorrow.  The cells harvested today will be given to John tomorrow. If you know Kathy, you know she was not happy to hear her first day harvest grade was less than A+. But Dr. Leung came by to offer reassurance that the today's transplant would go on as scheduled and the solution was to add another harvest. Kathy assured him that the harvests pale in comparison to what John has endured.

These next days as the cells begin their job of giving John new life will be some of his most challenging yet. Please keep praying for his strength and comfort and that the transplant successfully brings his forever cure.

Love to all of you who are lifting up John and his family,
Kelly Crum
Guest Updater

Countdown: Day -2 (November 19th) & Day -1 (November 20th)

Day -2

At 9:00pm, John finished with his last Thiotepa bath.  John was a trooper, especially when the midnight and 4:00am baths came around.  With Thiotepa in the rear view mirror, it was on to a new Chemo called Melphalan.  This was the first of two doses and the final type of Chemo before transplant on Friday. A side effect of this chemotherapy is oral ulcers. To mitigate the initial onset of ulcers, John was required to suck on ice cubes the entire time the chemotherapy was being administered. Melphalan also causes nausea and vomiting and we spent the day trying to keep John as comfortable as possible.  This Chemotherapy is also very toxic on the liver and with John’s liver issues the Doctor’s are monitoring this very closely. Today Kathy and I also started to discuss with John some of the early side effects of the stem cell transplant.  It’s highly likely John will throw up blood and mucus post transplant. We felt he should know about is so he wouldn’t totally freak out when it happened. This made John very anxious and scared but he was appreciative that we shared this with him. Kathy continued to prepare for the Stem Cell donation and completed her 4th round of G-CSF injections.  The pain from the shots kicked in and she had to up the pain regime from Tylenol 3 to Oxycodone. 

Day -1

John had a stable day until 12:00 noon.  He received his 2nd dose of Melphalan around 11:00am and the nausea/vomiting came quickly soon after.  John is on a battery of anti-nausea meds but the poison going into his body is so strong, it’s hard to find relief.  While I was with John, Kathy was donating the first batch of stem cells. This was a long 7-hour process that totally wiped Kathy out.  The Stem Cell team was extremely please with the quantity of cells Kathy produced.  The harvested Stem Cells will be processed tonight and transfused into John tomorrow. I can tell John is anxious and scared about tomorrow and I wish I could comfort him more.  Kathy will be back at it tomorrow, donating Stem Cells for John’s 2nd transplant, which will take place on Saturday. 

Tomorrow is John's Day 0. There is a reason they call the start date of transplant “Day 0.” Your immune system is wiped out with heavy-duty chemotherapy and replaced by a foundation of healthy stem cells. Please keep John in your thoughts and prayers tomorrow.  Pray for John's liver to stay strong enough to handle the chemotherapy that has been thrown at him and pray that the transplant cures John forever! #JHUD

Love,

Rich (Guest Updater)

Countdown: Day -4 (November 17th) & Day -3 (November 18th)

Day -4

Stable.  With a stream of anti-nausea meds running around the clock, John managed to not throw up!  It also meant John felt like eating and was able to keep down two smoothies. This was a relatively better day then the prior days.

Day -3

Today was a bit more complicated.  John had a new chemotherapy, Thiotepa.  He was given 2 doses - this morning and this evening.  It’s released through the skin for 24 hours after its infusion.  So, John is required to bathe every 4 hours for 36 hours (we finish with baths late tomorrow night)!  By bathe I mean wipe down every nook and cranny of his body.  If it’s not wiped off it can burn the skin and/or leave it permanently discolored.  I wipe down the top portion of his body and leave him to the bottom half.  He’s been doing a great job so far but we’re only on bath 3 of 9.  He has to change his clothes every 4 hours as well – so, it’s mandatory that he wear hospital scrubs that can be thrown away after each use.  His dressing around his new central line is changed after each bath as well.  On top of that, every 4 hours all the surfaces that he has touched has to be wiped down with hospital grade cleaner and all of his bedding must be changed.  Rich and I are only allowed to touch him when we are wearing gloves & chemotherapy gowns – this is especially heartbreaking.  It’s hard to fathom a poison so potent is running through John’s veins. 

It’s going to be a long night. 

Love, Kathy

Countdown: Day -6 (November 15th) & Day -5 (November 16th)

Day -6 started out on a high note.  John was alert and motivated to start checking tasks off his list.  I used window markers to make a checklist (who doesn’t love a list) for him.  Everyday he needs to walk around the transplant floor 5 times (11 times is a mile), rinse with his mouth care washes 3 times a day, breath into his respiratory device (acapella) 3 times a day, and take a betadine bath 2 times daily.  So, off we went for our walk.  John was walking as slow as molasses and his ankles were buckling in but he was up and walking.  Times like this allow John and me to have some heart-to-heart discussions.  I expressed how hopeful the team was that my stem cells, memory cells and NK cells would do the trick and wipe out his leukemia.  He looked at me with the sweetest face and said, “please don’t feel badly if your cells don’t work, it won’t be your fault”.  My throat went dry and my heart sank.  My sadness was two fold: he was thinking about the transplant not being successful and he was thinking about how I would feel if it didn’t bring him his cure.  I tried to keep my composure and let John know that we all believe this is the answer to our prayers and that being a part of the process is an honor!  The walked ended a short time later with wink and a smile. 

His day -6 chemotherapy was an old nemesis, Cyclophosphamid.  Even small doses in the past have made John very sick.  Well yesterday’s dose was very high.  He almost instantly started feeling sick.  The nausea, vomiting and diarrhea lasted through the night.  On top of the horrible side effects he was required to empty his bladder every two hours (to prevent the bladder from bleeding). Given the amount of narcotics he was on, he was having issues with urine retention.  Ugh, it caused a lot of anxiety and a lot of additional tears.  We are all mentally and physically exhausted.  Day -6 was Hell.

Day -5 chemotherapy is complete.  John has tolerated Fludarabine in the past but he’s still very nauseated from yesterday’s therapy.  His body is just so tired and beaten down.  He is currently resting comfortably, thanks to the numerous different medications running through body.  But, things change rapidly around here. 

I began my daily G-CSF shots this morning – they are used to stimulate the bone marrow, producing lots of stems cells and releasing them into the blood stream so there will be lot to harvest! 

The countdown to transplant continues. 

Thank you for your faithful prayers.

 Love, Kathy

Countdown: Day -8 (November 13th) & Day -7 (November 14th)

We are officially in Transplant.  John’s last MRD test showed that his Leukemia burden was on the rise so, Dr. Pui and Dr. Leung moved mountains to start the Transplant conditioning process earlier than planned.  It’s not ideal to start transplant MRD POSITIVE (it’s devastating really) but John’s organs are not holding up very well and he can’t tolerate another round of ReIntensification in addition to the Transplant conditioning (chemotherapy). 

This past Wednesday morning was a whirlwind of appointments and meetings, tying up all of the loose ends of the pre-transplant process.  The most stressful appointment was his radiation simulation.  It was a NIGHTMARE!  To our surprise John’s total lymphoid radiation required a radiation mask.  It’s a mesh mask that is molded to his face and BOLTED to the radiation table!  His legs are spread apart and put in a leg mold and his “boy parts” are placed in a very archaic metal device to shield them from radiation.  It is terrifying and demoralizing.  After that appointment John melted, crying for hours.  It was a whole new feeling of brokenness.    

After a very emotional morning we dragged ourselves to the clinic for our consent meetings, to sign the protocols for the Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation.  I was required to sign my donor portion first.  I entered the consult room, alone, and was caught VERY off guard when I found an advocate waiting for me in the room with Dr. Leung and his research nurse – for whatever reason – I felt ambushed.  She was a seemingly nice older women but I was in NO mood to go over the protocol word for word.  I’d already combed over it multiply times  – no matter what the risks, I was signing it!  I shot her a nasty glance, grabbed the pen, flipped to the signature page and attempted to sign it.  My new advocate friend found the need to grab my arm and literally gasp at the thought of me just signing the paperwork.  She thought maybe I didn’t “understand” the risks.  She naively attempted to “dumb it down” until I exploded – I think venom was spewing from my mouth as I ripped her to pieces.  You would have thought that would have shut her down – but she proceeded to talk down to me (like I was a child), going on to explain the new chain of command - that I was no longer “allowed” to contact Dr. Pui and Martha May; they were not his caregivers while in Transplant.  That was it – claws came out!  I don’t remember much of what I said but I made it very clear that Dr. Pui and Martha ARE and ALWAYS WILL BE part of John’s team of caregivers.  I think she finally understood I was well educated and well connected.  She never opened her mouth again.  She sat quietly during the next meeting where Rich, John  & I discussed the recipient portion of the protocol in great detail.  It was an emotional meeting, we left it a little worse for wear but got through it.

We checked into the Transplant Floor late Wednesday night, about 9 o’clock.  John settled into his new patient room and Rich, Bella and I set up the parent room – settling into our new home for the next 40+ days.  Emotions were high and there were a lot of tears all around. 

Yesterday, Thursday, November 13th was Day -8 in our transplant countdown.  Since we moved his transplant day up we needed to shave off day -9 and combine that day’s radiation to day -8.  So, early yesterday morning was his first (of 4) scheduled radiation appointments.  We woke to John having a full-blown panic attack, refusing to go to radiation.  Not at all a surprise given the nightmare the day earlier.  John was curled up in the fetal position on his hospital bed, crying and pleading with us not to take him to radiation.  It was heartbreaking.  After 45 minutes of sobbing, John called out for Martha.  I called her in the clinic … before I could even give her a reason for John needing her, she said “I’m on my way” – she must have ran across the hospital because she was here within minutes.  She knelt down next to him and he shared with her his fears (their relationship is built on trust and in that moment you feel that John entrusted her with his deepest feelings).  But, we were no closer to getting him out of the bed and down to radiation.  Que the soft lights and the angels singing … in walks Dr. Pui.  The room goes totally quite for a moment – the only sound is an occasional sniffle from John.  He told John, “I’m here to take you to your radiation appointment” (he must have heard John was having a difficult time).  He went on to say that in the 38+ years he’s worked at STJ he’s never been to radiation department and has never taken a patient to a radiation appointment.  So, off they went; Rich pushing John in the wheelchair and Dr. Pui by their side.  It was a tender moment.  Not only did Dr. Pui walk John to his appointment he stayed and sat with Rich in the waiting room.  So, even as we enter this new phase, Dr. Pui and Martha continue to support John and our family.  As I mentioned earlier, they will always be John’s doctor and nurse, always!

When John returned from his first radiation appointment he was completely wiped out.  He had a lot of medication and he was emotionally exhausted from the morning’s ordeal.  He slept through his first dose of chemotherapy and woke shortly before his 2nd radiation appointment for the day (Yes – two radiation appointments on day -8).  It went just a little bit smoother.  He was still anxious and reluctant but succumbed to the medications and lay defeated on the radiation table.  After, Rich brought him back up to the transplant floor and snuggled him in bed for the night. 

Dr. Pui and Martha came in to check on their sweet boy and we called it a night.  Day -8 was finally over.

Today, Day -7 started off with radiation appointment number 3.  He again was hesitant but didn’t resist as emphatically as yesterday.  When he returned from radiation Dr. Pui was there to greet him (his second visit to the transplant floor today).  I could tell that John felt proud of his accomplishment and Dr. Pui was equally pleased.  Their relationship is certainly a special one!  His second dose of chemotherapy went well and he had a short catnap before heading to his 4th and final radiation appointment late this afternoon.  He had some moments of alertness today but tonight he is quiet and for the moment comfortable.

Love, Kathy

 

Regardless of The Obstacles …

This past week has brought tremendous heartache.  

Rich & I had conversations that we thought we’d never have to have and heard information we never thought we’d have to hear.  Most of our days were spent with our faces in our hands, hiding our tears and swollen eyes. 

I am being vague for several reasons – mostly to protect or hearts and our privacy. 

Regardless of the obstacles ST Jude is doing everything possible to allow John to proceed to Transplant.  The tentative plan is for John to be admitted to the Transplant Floor next Sunday, November 16th – he’ll begin his 9-day chemotherapy and radiation conditioning regimen then receive his first Stem Cell Transplant on November 26th (Day 0) and his second November 27th (Day +1). On December 2nd (Day +6) he’ll receive his Natural Killer Cells.   

John’s pre-transplant schedule is packed with appointments: Labs, MRIs, CT scans, X-rays, EKG-ECHO, Radiation Simulation and Surgery for his new central line placement, etc.  It’s going to be a busy week.

Dr. Pui, Martha May and John’s amazing team of dedicated caregivers are walking with us every step of the way.  We are especially grateful for their exceptional care and compassion.    

I pray John remains stable and our emotionally drained family finds renewed strength and determination.  I pray God delivers us the miracle that we are begging Him for.

Thank you for your continued love support.

Love, Kathy

 

Why Is This Happening?

The last few weeks have been some of the toughest weeks we’ve had.  

Gallbladder Surgery – Monday, October 13th

Instead of starting Round 2 of his ReIntensification, John had surgery to remove his gallbladder (it was too problematic to continue chemotherapy with his irritated gallbladder).  All seemed to go well … the surgeon came out of the OR and told us that surgery went “as planned”.  The gallbladder was removed via laparoscopic surgery – through his belly button.  However, it was so enlarged (angry and full of stones) that they needed to puncture it in order to effectively grab and remove it.  Well, I guess, “as planned” means one thing to surgeons and another thing to a patient family.  As I sat in the recovery room with John, information regarding the surgery started to unfold.  It turns out John had some “bleeding” – as they peeled his very irritated looking liver from the gallbladder it began “oozing”.  The surgeon also noticed he had a significant amount of fluid accumulation in his abdomen and around his lungs, ascites (remember this word – your going to see a lot of it in this post).  We all posed the question, “why is this happening?”  Since we had no answer to that question, they chose to be cautious, moving him to the ICU for observation.  Just that morning I passed the ICU and told Bella that I never wanted to walk through the doors of the ICU – sure enough – the Hagen’s were rolling into the ICU.  John spent two days there.  He was stable, and showed no signs of internal bleeding.   However, they never could give us a definitive reason for the ascites but everyone seemed to believe it would resolve itself.  Our ICU experience was difficult and we were relieved to be discharged and able to continue his healing process back at the Target House.  While the recovery was slow and painful, John seemed to be improving. 

Visit from Mr. Fred – Friday, October 17th

While John was being treated at Levine (in Charlotte) we were blessed to meet and become friends with a volunteer, Mr. Fred.  He was one of the only people in the clinic who was genuinely interested in getting to know our family and John’s story.  Wonderful Mr. Fred, came to see us at St. Jude!  Unfortunately, John was too sick for the visit but I enjoyed a lovely lunch with him at the Kay Kafe and gave him a tour of The Jude (I think he was impressed).  Since John’s relapse Mr. Fred is the ONLY person from our local hospital who has checked in on John.  You can imagine how that makes us feel.    

All hell broke loose - Saturday, October 18th

John was feeling good, he had a healthy appetite for the first time in weeks (he lost over 10 pounds at this point) he enjoyed lunch from Whole Foods then, he snuggled into bed for a much-needed afternoon nap.  When he woke, it was a shit storm (figuratively and literally).  Rich and I heard him crying out.  When we entered his room he was suffering from uncontrollable vomiting, diarrhea and pain.  We called St. Jude and we took John over the Medicine Room (an outpatient clinic at St Jude open 27/7/365).  John was treated with anti-nausea and pain medication.  No one had a clear answer as to “why is this happening” – was it food poisoning, acute gastritis, a bile leak from his gallbladder surgery, the ascites, his liver, an infection ….   After a few hours we thought he was stable enough to take back to The Target House.  Boy, were we wrong!  Vomiting, diarrhea and pain came back with a vengeance.  After checking back into the Medicine Room again (it’s the middle of the night now), it was decided John needed to be transferred to the Inpatient Floor to control his symptoms.  Even up on the floor nothing they were throwing at him seemed to work.  We exhausted our usual arsenal of anti-nausea meds and he was blowing through pain medication.  He was so sick!  John was literally begging us to make it stop and was crying out for help.  He was beaten-down and humiliated.  Rich & I were heartbroken and panicked.  Bella was scared.  It was a soul-crushing day. 

Enough was enough - Sunday, October 19th

Early Sunday morning Rich emailed Dr. Pui and, as usual, he came into the hospital to oversee John’s care.  He called in the surgical team (in case they determined he was leaking bile fluid) ordered cultures, an ultrasound, CT, blood chemistries etc.  All hands were on deck (this ONLY happens at The Jude on a Sunday!).  It took most of the day to get John stable.  They pushed in antibiotics, antifungals, and every known anti-nausea drug they had.  John was finally hooked up to a PCA, which delivered a constant stream of Dilaudid; it also allowed him to push a button when he needed an extra boost of pain medication (praise God).  At the end of the day, we were all still asking ourselves “why is this happening?”  Exhausted and scared we all slept at the hospital that night: Bella in the adjoined parent room and Rich & I side by side on a cot next to John’s hospital bed.  I could feel Rich’s heart racing and I could see fear in his eyes.  I couldn’t control my anxiety and throughout the night tears just streamed down my face.    

Dropping Counts and rising weight - Monday, October 20th

For no reason John’s counts were plummeting (white blood cells, red blood cells and platelets).  We were still on a quest for answers regarding John’s ascites, vomiting, diarrhea and now, low counts.  The ascites, fluid in his abdomen was increasing rapidly – his weight was up over 10 pounds!  Frustrated, we still didn’t know “why is this happening?”  It wasn’t for lack of effort.  John’s room was constantly filled with doctors most of the day.  Results from the cultures were coming back negative for bacteria/fungus.  Scans didn’t give us any answers they just verified what we already knew – he had fluid accumulating.  Regardless of the cause we continued to treat the symptoms.      

Typhlitis – Tuesday, October 21st

After our daily visit with ultrasound, the radiologist noted that John had developed Typhlitis, inflammation of a section of his large intestine.  No shit Sherlock – he’s had diarrhea for days!  At this point his list of ailments just kept on growing. 

Improvement – Friday, October 24th

After nearly a week, John finally turned the corner.  His Typhlits was resolved and with the help of very strong diuretics his ascites was slowly improving.  We were discharged and headed back to the Target House.

Much Needed Rest – Saturday and Sunday October 25th, 26th 

After a very long week we all needed to recoup before resuming ReIntensification.  I spent the weekend with my girlfriends from CLT, they came in for a quick visit – It was beyond wonderful to get a hug and talk to face-to-face.  It’s just what I needed to recharge.  Rich caught up on work and sleep.  Bella caught on schoolwork.  And John was able to rest with no pain, vomiting or diarrhea. 

Getting back to fighting Cancer? – Monday, October 27th

We showed up bright and early for our clinic appointment, ready to get back into the fight and resume ReIntensification.  We just had one quick stop, a visit with our friends over in ultrasound.  We were a bit irritated by the request since John was just cleared of Typhlitis a few days earlier but we understood the need to be cautious given John’s history.  To my surprise a VERY swollen colon and a large re-accumulation of fluids in John’s abdomen and around his lungs appeared on the ultrasound screen.  I’m pretty sure my eyes almost popped out of my head.  Feeling defeated, I headed back to the clinic to share the news with Martha & Dr. Pui.  Gauging by their reactions, I’m pretty sure they were shocked too.  Martha promised me from the very beginning, she would tell me when she was “concerned”.  This was one of those times.  Martha pulled me aside and said it was time to get a biopsy of the fluid – she was not only concerned about infection but also about malignancy in the fluid.  I was breathless – fear literally took my breath away.  So, we headed back up to the 2nd floor – inpatient – and began treatment for the Typhlitis and Dr. Pui made plans for the needle biopsy.  The same question arose, again, “why is this happening?”

Ultrasound Guided Needle Aspiration of Ascites – Tuesday, October 28th

The procedure went well.  Initially the radiologist intended on only aspirating a sample of the fluid but once he saw the amount of fluid in the abdomen he decided to drain as much as he could 1.3 liters!  The fluid was sent off for cultures – for everything imaginable.  Throughout the day Dr. Pui would barge through the door and deliver news (it scared me to death every time the door flung open) the results: negative for malignancy, bacteria/fungus and bile.  There are lots of theories surrounding John’s ascites but still no definitive answer – everyone at the moment is leaning toward a virus.  We just continue to treat it with a combination of albumin and lasix (diuretic).  

His MRD is what? - Wednesday, October 29th

Still treating John’s very painful bout Typhlitis and ascites with no sign of a resolution.  The elephant in the room, John’s untreated Leukemia, is impossible to overlook.  Since John hasn’t had chemotherapy since September 21st, over a month ago, Dr. Pui had ordered another MRD test, which was drawn this past Monday, October 27th. 

MRD (minimal residual disease) recap:

MRD at the time of relapse = 0.06%

MRD his first day of ReIntensification = 0.074%

MRD after his first round of ReInsensification = 0.012%

MRD at the onset of abdominal issues, October 20th = 0.023%

The MRD test result delivered by Dr. Pui today = 0.002%!  Anything under 0.01% is considered MRD NEGATIVE 0.00%.  So, yes, technically John is MRD NEGATIVE.  Why is this happening?  It seems John’s immune system is fighting off a possible virus along with his residual Leukemia.  I think it’s a combination of residual chemotherapy, an immune response and God.     

We will repeat the MRD test this coming Monday.  IF the test comes back lower than 0.01% we will start the pre-transplant process.  

Please pray for John’s body to heal, for his immune system to continue to kill his Leukemia and for answers as to, why is this happening

Love, Kathy

Time to Regroup

We have disappointing results from John’s latest MRD test.  He is MRD POSITIVE – 0.012% Leukemia (down from 0.07%).  It’s a step in the right direction but not enough to propel him to transplant.  We will regroup – pick ourselves up, and continue to fight.  The plan is to meet with Dr. Pui tomorrow, Friday, and discuss what the next cycle of high dose chemotherapy will entail and map out a general timeline of when that may begin.  

John marrow has recovered, somewhat, from his last course of treatment.  Its producing lots of platelets (which it hasn’t done in a very long time).  His spleen had been sequestering them for over a year so, it’s a bit perplexing why it’s releasing platelets now.  Regardless of the reason it’s a great.  

He’s has a VERY angry gallbladder.  He’s had gallstones for a while but he is experiencing acute gallbladder attacks so his gallbladder needs to be removed a.s.a.p.  Surgery was scheduled for tomorrow, Friday, but John counts took a dip and we need to wait for them rebound (immune system needs to be stronger).  It will be performed via laparoscopic surgery at St. Jude.  

John is also experiencing symptoms related to toxicity.  He has critical levels of Voriconazole (an antifungal used a prophylaxis while John’s count were low).  He also had a reaction to a Scopolamine Patch he was wearing to control his nausea.  This past week John started to experience moments of confusion.  I related it to “chemo brain” – but by Tuesday, late afternoon, he began to ramble and have hallucinations.  It was scary!  After chatting with Dr. Pui & Martha we pulled him off these medications, ran some labs and had a complete Neurological exam (ONLY at The Jude would things like this be attended to so quickly – the response time to our concerns was immediate!)  John has always been sensitive to medications and these in particular didn’t metabolize in his system, as they should have.  Happy to report the delusions have ceased since dropping the above-mentioned medications.  John is also having uncontrollable bouts of nausea.  Staying ahead of it isn’t easy.  We spent most of today in the A Clinic (Leukemia Clinic) getting IV anti-nausea meds to help control his vomiting.  They side effects of chemotherapy and the medications to ease the side effects of treatment are so hard on John’s body.     

John lost all of his hair last week.  It started to “shed” the prior week.  His pillow and sheets were covered with little black hairs.  He knew his hair was barely attached to his scalp.  So, he took his favorite CPS cap and headed to the shower with a full head of hair and came out an hour later bald.  As the water from the shower hit it, it instantly fell into the tub.  Just the pressure from the water rinsed the hair right from his head.  I could hear him flushing handfuls of hair down the toilet – it just kept flushing and flushing.  It was so hard for Rich & me to listen to, but we waited patiently, giving him encouragement through the door and greeting him with open arms when he finally emerged.  Tears streamed down his beautiful face, he was heartbroken.  

John is anxious regarding the ongoing therapy to rid him of his residual disease burden but continues to fight with great determination.  That doesn’t mean he doesn’t have his moments; he cries and expresses great sadness from time to time.  He is very homesick, missing his puppy, Tula, our home and his school.  This journey is both physically and mentally exhausting.  John is taking one moment at a time – as are Rich, Bella and I. 

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles”.   ~  Christopher Reeve

 

Thank you for your continued prayers.

Love,

Kathy

Wish Lists:  Thank you! Thank you!

John:  http://amzn.com/w/24WYP211BEIRB

Bella: http://smile.amazon.com/registry/wishlist/NF3I3T9K0O5

Hagen Family:  Gift-cards to Whole Foods, Fresh Market or Starbucks! 

Please support Childhood Cancer research by attending the annual St. Jude Evening of Hope event and/or supporting it through sponsorship or a personal donation. www.stjude.org/eveningofhope

 

 

 

 

Making Room for HOPE

This has been a long journey, over two and half years.  At the start of it I was inexperienced and uneducated about childhood cancer.  The years have hardened me but more importantly educated me.  I am more knowledgeable now about its many faces, not just from experiencing John’s journey but also from witnessing the journey of others.  In addition, I immerse myself in materials written by Leukemia doctors at St. Jude and other prominent doctors around the country.  If there is something I don’t understand, I always seek out the answer – there is no excuse for being naïve in this community.  But, knowledge isn’t power in this instance.  Cancer has the power, I can only use knowledge to guide my reaction to destruction it presents me, I can’t control it and this has left me tortured and broken with little room for HOPE.   

The numbers or percentages published regarding childhood cancer statistics, Leukemia in particular, doesn’t sway me; they have never enabled me to fully believe.  If it’s not a 100% cure rate (by that I mean long term, event free survival not the measly 5 year survival rate) then that means someone’s child has succumbed to this horrible disease.  I have always feared that child could be mine.  

Before John’s relapse, as we were nearing the finish line, for a brief time, I allowed myself to find happiness.  I was dreaming.  I let myself envision his end of treatment celebration, his first day of high school and even trips around the world.  I imagined hearing a house full of laughter.  It felt good to let HOPE sneak into my heart, but now, having felt it’s sweet embrace, I am left even more broken-hearted.  I am struggling to find the purpose in allowing it in again.  It proves safer for my heart to reside in the grips of doubt; its disappointment doesn’t hurt as badly.  But, I hate feeling the pressure of its grasp and I am longing to make room for HOPE once again.

Fear and HOPE need to coexist - I can’t let go of fear and I have to make room for HOPE to survive this journey.  Fear protects me and fuels my passion to fight this awful disease and HOPE liberates me. I think only by continuing to add faith to the mix; I can finally exist with fear and hope intertwined. 

Rich is much more silent than I am regarding his feelings surrounding John’s diagnosis and relapse.  Yet, he has always outwardly displayed HOPE.  He believes that fear doesn’t change our path and HOPE makes it easier to travel on.

Bella is bursting with HOPE.  She is always quick to point out the bright side of every hurdle we jump over.  She makes me laugh when all I want to do is cry and she reminds me that together we are stronger than we are apart.  She is a survivor too and I don’t acknowledge her journey often enough.  This fight has given her compassion and bestowed upon her grace.  I am so proud of her strength and resolve.   

John is filled with HOPE too.  I am astonished with his unwavering ability to believe.  It has left him hurt before yet, he continues to trust in those fighting for him.  He finds peace in HOPE.

His body is showing signs of recovery – he is no longer dependent on blood products and his counts are steadily improving.  Our tentative plan is to test for MRD (minimal residual disease) early this week.  Please continue to pray that he is MRD NEGATIVE (0.00% cancer)!  If he is MRD NEGATIVE we start the road the transplant.  If not, we regroup.  As I mentioned in an earlier post, entering transplant cancer free exponentially increases the odds of a successful, curative transplant.  I’ll keep you posted! 

Wish Lists:

John is continuing to build his Star Wars fleet!  It’s incredible to watch him get lost in the moment, forgetting everything around him.  It’s just him and his Legos.  Thank you all for sending along the Legos on his Wish List!   http://amzn.com/w/24WYP211BEIRB

I asked Bella to make a Wish List too :) http://smile.amazon.com/registry/wishlist/NF3I3T9K0O5

We have really appreciated the gift-cards to Whole Foods, Fresh Market or Starbucks!  With our busy hospital schedules it helps make mealtime/snack-time easier (and healthier) for our family. 

The St. Jude Evening of Hope event website is up and running! I hope you will consider supporting Childhood Cancer research by attending this year’s event and/or supporting it through sponsorship or a personal donation. www.stjude.org/eveningofhope

“No child should die in the dawn of life." ~ Danny Thomas

Thank you all for your love and support.  We feel blessed to have you all walking this journey with us.

Love,

Kathy

 

 

The Road to Transplant

Grab a coffee – this is a long one.

It’s a bit of a technical update but Rich & I want to share the details of the transplant process.  We met with Dr. Leung (Head of STJ transplant) yesterday to discuss “the plan”, Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation.  It was a difficult meeting, emotionally.  As a parent it’s so hard to hear the potential side effects of the new chemotherapies, radiation and engraftment process.  Survival was mostly discussed in terms of days – surviving the pre-transplant conditioning, surviving the engraftment process, surviving the 100 days of post-transplant.  They will be monitoring for toxicity/organ failure, infection, rejection of stem cells and, Graft vs. Host Disease – all potentially fatal.  Long-term survival milestones were also discussed (below).  While this process is scary, it’s John’s best chance at a cure.  I left the meeting shaken, heartbroken and clinging to scraps of hope.    

We are still focusing all of our prayers on John’s Remission.  Starting the transplant process MRD Negative exponentially increases the odds that the transplant will cure John.  After John recovers from ReIntensification (about another 3 weeks) Dr. Pui will perform another bone marrow aspirate.  If it’s negative (0.00% cancer) we start the pre-transplant work-ups  (CTs, X-rays, MRIs, Ultrasounds, Dental visits, Labs etc...).  He would also have surgery to remove his subcutaneous port and insert a different type of central line called a Hickman.  If it’s not negative, we need to regroup.  So, please continue praying for MRD Negative!

The transplant process will consist of a few phases: conditioning, post-transplant engraftment and 100 days of isolation.  About half of those days will be spent in the Chili’s Care Center/Transplant floor on the STJ campus.  The other half will hopefully take place back in the comforts of our home-away-from-home, the Target House II.

Conditioning: John will be on an intensive 9-day chemotherapy and radiation regimen leading up to the actual transplant.  This process will completely wipe out John’s bone marrow.  (negative days representing days leading up to transplant, Day 0 being the day of the first transplant, positive days being the days post transplant #1)    

Day -9  Total Lymphoid & Spleen Radiation

Day -8  Total Lymphoid & Spleen Radiation, Chemotherapy

Day -7  Total Lymphoid & Spleen Radiation, Chemotherapy

Day -6  Chemotherapy

Day -5  Chemotherapy

Day -4  Chemotherapy

Day -3  Chemotherapy

Day -2  Chemotherapy

Day -1 Chemotherapy

Day 0   Stem Cell Transplant #1

Day +1 Stem Cell Transplant #2

Day +6 NK Cell Transplant

 

Engraftment:  I was told that John would be the sickest during this phase.  His body will be hard at work trying to accept the Stem Cell/Natural Killer Cell infusions.   

+11 By day plus eleven they need to see some type of recovery.  His body needs to show signs of engraftment!!!! 

+12  through +30  They will continue to monitor engraftment process.  They will measure his Chimerism, engraftment analysis (what % he is of donor cells).  Dr. Leung said there is only one acceptable Chimerism at St. Jude and that’s 100%!  In this case even 99% is a failing grade.  If he is not 100% he will receive “boosts” of my donor cells.  Infection control will also continue to be a huge priority.

100 days of Isololation Continue:  During this time it’s critical John continue to remain isolated (only leaving the Target House for Clinic visits).  He will have virtually no immune system.  He will have the support of IV antibiotics and antifungals to protect him but, exposure to a virus or resistant bacteria would be life threatening. 

+30(ish) through +100(ish) Continue to monitor Chimerism on an outpatient basis. 

+100(ish) If he is 100% donor and his immune system has begun to recover he will be allowed to come back to Charlotte. He would need to be monitored at Levine and return to STJ on a monthly basis for MRD and Chimerism testing.

Long Term Goals:  The important milestones for transplant patients are at 1 year and 2 year follow-ups!

One-year mark – Dr. Leung said if John remains cancer free at this point we should throw a party

Two-year mark – Dr. Leung said if John is cancer free at this appointment we should move on ….

Donor Process:  Rich & I are both a haploid match (1/2 match).  But, after Dr. Leung looked at my genetic makeup he feels my DNA is better at fighting Leukemia. (fyi - every day we have pre-cancerous and cancerous cells in our bodies but our immune system kills these cells – this is not the case for John)  If my Stem Cells and Natural Killers cells fully engraft Dr. Leung believes they will be able to fight off any residual Leukemia in John’s body.  This is a basic description  - the more scientific discussion we had with Leung was much more complex and incredibly fascinating.  During John’s pre-transplant conditioning process (days -5 through +1) I will be taking daily injections of G-CSF, a blood growth factor & stem cell mobilizer, to increase the number of stem cells in my blood so more cells can be collected for John’s transplant.  The stem collection, done by Apheresis (6-8 hour collection), will take place at STJ on day -1 (to be used on day 0) and on day 0 (to be used on day +1).  The NK Cell collection will take place on day +5 (to be used on day +6).  The cells need a day to be filtered and processed before John’s receives them – to ensure the best possibility of engraftment.  There is a bit of a catch with the donor process, I will probably be unable to be at John's bedside during this time.  There are some mild to severe side effects.  So, Rich will most likely need to hunker down with John and I’ll need to hunker down at the Target House and create lots of stem cells.   

On a side note, initially we were praying that John’s sister, Isabella, would be a perfect match.  After we were told Isabella was not the match we learned that the Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation was a better option BUT had Bella been a match, the FDA would have insisted we use her as a donor.  I was always under the impression that having a perfectly matched sibling would be ideal.  It turns out that, that path would have involved a more toxic conditioning phase and full body radiation.  The Haploid transplant is less toxic and includes only Lymphoid/Spleen radiation.  So it turned out to be a blessing that she wasn’t a match. 

How’s John?  His counts have plummeted.  He received platelets yesterday and he will most likely need some type of blood product transfusion every other day until his body recovers from his high-dose chemotherapy.  His stomach is still having some issues so, he is still on round the clock Morphine.  He is spending his time watching TV and building some of the awesome Lego sets that have been sent to him!!! THANK YOU SO MUCH for bringing a smile to his sweet face. 

What is he doing about school?  He is enrolled at the STJ School.  Charlotte Prep will be working closely with his teacher here at STJ, helping him keep up with his classmates.  CPS has been amazing.  We are blessed to be part of such a loving and compassionate community!  My goal for John, academically, is to have him graduate 8th grade with his peers on June 2nd!  Dreaming of that moment gives me chills … Perseverance … Unstoppable Determination!

You all have asked “Do we need anything”? 

*John is loving his Lego sets and iTunes giftcards!  Thank you for visiting his Amazon Wish List and sending those wish list items to him.  http://amzn.com/w/24WYP211BEIRB  We appreciate it!

*Since we can’t have meals sent here people have asked what they can do for us - we would appreciate giftcards to Whole Foods, Fresh Market or Starbucks :)  It makes mealtime/snacktime easy for Rich, Bella and me to get their prepared meals.

Please consider: joining the bone marrow registry at bethematch.org, donating life-saving blood products at your local blood bank, becoming at St. Jude partner in Hope www.stjude.org/partnerinhope and/or donating to our annual St. Jude event www.stjude.org/eveningofhope (website will be updated soon)!

Thank you for your continued prayers, love, and support!

Love,

Kathy

 

Relapse

It’s painful to type “that word” let alone say it.  We’ve spent the last 2 ½ years desperately trying to escape it.  But, on September 9th we were informed John had relapsed.  We are devastated, truly heartbroken.  With only 14 weeks of treatment to go, hearing his Leukemia has returned has once again brought us to our knees. 

How did we find out?  Over the last month, John’s counts had been low.  Even after holding chemotherapy for a few weeks he wasn’t bouncing back.  We prayed it was just suppressed bone marrow from years of chemotherapy.  I had a feeling things weren’t right, just as I did years ago, so I asked if we could bring John to St. Jude for an MRD test (a highly sensitive test performed at STJ – testing for minimal residual disease) as well as testing for bone marrow failure.  The initial tests looked good so Rich & John hopped on a plane back to Charlotte.  Before they even got to baggage claim Dr. Pui called, John’s bone marrow aspirate showed he was MRD POSTIVE - 0.06% Leukemia cells present.  When I swung around to pick them up I could see tears pouring down John’s face and heartache in Rich’s eyes.  I knew.  My body started to shake as my heart broke.  

Where are we now?  We are back at St. Jude, residing at the Target House II (long-term housing). 

Target House II
1811 Poplar Ave.
Patient: John Hagen Room #519
Memphis, TN 38104

How is John feeling?  He just finished 7 days of inpatient High Dose chemotherapy, ReIntensification.  (we are praying this is enough to put him back into remission, 0.00% cancer)  He is totally wiped out – physically and mentally exhausted.  The reality of his relapse has started to sink in.  He is determined to fight for his forever cure but apprehensive about the unknown road ahead.  He’s quiet.  He’s trying to be strong – for himself and for us.  It’s heartbreaking to think just a few short weeks ago he was at school, hanging out with friends, dreaming of his end of treatment day - he was finding happiness again.  It’s painful to watch him deteriorate.         

What’s the plan?  John is on the path to transplant (Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation).  I will be the donor.  This process is new to us and we don’t have all the details yet.  We are meeting with the head of transplant, Dr. Wing Leung (the Dr. Pui of transplant), on Wednesday.  After we educate ourselves on the process I’ll post the details.  By the time we get to transplant, this momcologist will have the protocol memorized! 

What do we need? 

* Prayers.   Prayers for John’s cure, strength to walk down this new path, and courage to stare fear in the face again!

* Legos.  Building Lego sets has always been therapeutic for John so, I know he’d appreciate Lego sets.  He created a Wish List on Amazon:  http://amzn.com/w/24WYP211BEIRB  - There is a big one on there we’re hoping to get before transplant (hint hint hint).  It’s a STJ “tradition” for transplant kids to build gigantic Lego sets during the 100 days of isolation following a transplant.

Thank you for supporting our family.

Love, Kathy

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
--Eleanor Roosevelt

 

Repost of my Huff Post Piece

I wanted to share a blog post, part of a series produced by The Huffington Post and St Jude Children's Research Hospital in recognition of National Childhood Cancer Awareness. You can link to the Huffington Post site here http://m.huffpost.com/us/entry/4019025 or read below.

We often find our 12-year-old son, John, deep in thought – his handsome, soft face full of contemplation, thinking about his reality and his future. A few weeks ago, during one of his moments of reflection, in a half-serious, half-joking voice, he said to Rich (his father) and me, “You need to let go.”

Rich answered quickly and with fervor, “I am. I am moving forward with you.”

I took a deep breath and pondered a moment. I also wanted to answer with enthusiasm and from a place of peace, but honestly, I struggle with letting go of the emotional baggage that we have accumulated along John’s journey with childhood cancer. So I responded with a heavy heart, “I’m trying.” 

Rich’s response was just right; precisely what John knew he would say and what John needed to hear. Rich is John’s security blanket, a constant source of strength and comfort and an unwavering companion. He is also the bond that holds our family together.

But, make no mistake, Rich hasn’t let go of anything. He puts it all away, deep inside, and only allows himself to visit the heart-wrenching memories in private. If you ask Rich how John is doing, he will eagerly reply, “Great,” so he doesn’t have to share his pain. He hides it along with his fears because he feels a sense of responsibility to carry our family forward, to inspire us and help us dream of better tomorrows. 

“I’m trying.” My response was raw and heavy and only partially true. I hang onto the dark, tortuous memories. I share them with family and friends, even strangers.

I want the world to know that childhood cancer is a nightmare. If people ask me how John is doing, I’ll paint them a picture of the agonizing reality of childhood cancer. I carry the memories around so that I can share them, giving people a cold, hard look at what hell looks like. 

Some of my recollections are blurry; my mind has mercifully allowed me to let them go. Others I choose not to let go of, especially the most painful memories. Those are often the ones that have revealed the greatest gifts. They have meaning. They have changed lives. 

I chose to share one of these memories with John, hoping he would better understand my struggle to let go of the past. Last year, during one of his intense rounds of therapy at St. Jude Children’s Research Hospital, I awoke in the middle of the night to the familiar smell of vomit. John’s bed was soaked and his body was so battered he wasn’t able to cry out for help.

With tears pouring down my face, I called St. Jude (open 24/7, 365) and was told to quickly bring him over and they would be waiting. After peeling his vomit-drenched clothes off, I anxiously wrapped him in a clean sheet and whisked him off to St. Jude. 

Waiting in the St. Jude lobby, as they had promised, was a nurse who quickly moved us into a room. A team of doctors and nurses took immediate action, working seamlessly to alleviate the side effects of the previous day’s chemotherapy. Once the medications took effect, the nurses helped me once again clean off John’s body, gently wiping off the remains of our difficult night. John was humiliated but too distraught to resist. I felt his shame and cried for him. 

Finally, after a long night, he was resting comfortably. Although it was the middle of the night, I wanted to share the events with John’s doctor, emailing him a quick note, letting him know John had a rough night, but was stable and resting. I joined John on his bed, cuddling him as I did when he was just a baby. At that moment, I needed him more than he needed me. 

A few hours later, before the sun rose, his doctor, Dr. Ching-Hon Pui, appeared in the doorway. He wasn’t there because he had to be. He was there because he wanted to be there, for John and for our family. I had to hold back my tears of gratitude as I listened to him make arrangements for John’s continued care.

We were later transferred over to the clinic where we were greeted by the warm embrace of our nurse practitioner, Martha May, my guardian angel. I explained to John: this is why I can’t let go of the past.  These dark memories have meaning. They have revealed gifts; compassion, renewed faith, hope and unconditional love. 

John struggles more with the present than with letting go of the past. He is painfully aware of his personal truth; he is on a 2.8-year St. Jude protocol, fighting childhood cancer, fighting for his life. While he is in remission, he suffers from many side effects related to his treatment: avascular necrosis (bone death), neuropathy (nerve damage), and a suppressed immune system, just to name a few. 

He misses out on birthday parties, school dances and soccer. Yet he finds the courage every day to keep fighting for his forever cure. 

John has outwardly let go of his pain and sadness while keeping the memories of this long journey intact, striking a remarkable balance for such a young man.  

With John, Rich and our daughter Isabella’s help, I know I will get there, too – eventually to a place where all of the fear and the anguish will one day be a memory with less bite, having served as a means to the love, compassion and strength that have survived. I will learn to let go of some things, while holding on to the most precious…with time. 

Kathy Hagen