Day -6, BMT

What?!? Only 6 days until my cord blood transplant?

Jade has been in GREAT spirits these past few days. While she does make regular inquiries about leaving her room, she is making the best of it -- tapping on the glass window of her room door to invite passersby in. But there simply are not enough volunteers, child life specialists, art therapists, doctors, nurses, etc. to keep up with her level of energy! So far, she has entertained a minimum of five visitors from the staff each day. If you cross the threshold, you will be asked, "Do you want to plaaaaay?"

Today, a couple of the nurses watched in amazement as one of the attending doctors played along sweetly with Jade and her doll house, only for him to knock the doll down into ketchup a few minutes in.  Jade let us all know that it was okay because "accidents happen sometimes."

Tonight, she is finishing up the first half of the conditioning regimen with no visible side effects from the medication... Tomorrow, she starts her final (prayerfully) chemo course... Then, July 3rd : Transplant Day.

Thank you for checking in, for keeping Jade in your thoughts and prayers. ‪#‎bravestrongready‬

Day -9, BMT :: New Rules

New unit. New routines. New rules.

No play room. No art room.
No trips to the meal cart.
No long walks in the hall.
Only one special stuffed animal allowed.
A few personal items and toys allowed (must be specially disinfected; new and unopened recommended).
Books should be new or only used by your child.
No visitors under age 12 (except for her brother).
No balloons.
No playing on the floor.
No sharing food from the same plate.
No fruits that cannot be peeled after washing.
No dried fruits unless they are cooked.
No unpasteurized fruit juices.
No salads.
No raw vegetables or herbs.
No restaurant foods.
No cold cuts.

Even a new way of noting the days. Yesterday was Day -9. Nine days and counting until Jade's transplant.   Despite the few dozen times Jade unsuccessfully negotiated to go for a walk - I'll wear a mask, -  she is all smiles and in surprisingly good spirits. She did have one definitive message for me though: "Mommy, no more new rules." Unfortunately, I couldn't make that promise.

In between her intense medication schedule, Jade spent most of the day getting oriented to the Bone Marrow Transplant unit. Tearing into her "welcome" basket from the Hope For Henry Foundation, breaking in a new toy from Grandma, enjoying a virtual play date with her big brother thru Google Hangouts, line dancing with dad and mom, watching The Pirate Fairy and The Little Mermaid, requesting that Frozen's Elsa visit her and build a snowman, and meeting with the nutritionist, physical therapist, child life specialist, Pediatric Advanced Needs Assessment team, primary doctor. Fortunately, we were able to squeeze in a good night's rest before Jade started on round-the-clock fluids and her daily schedule that consists of nine medications, one to destroy her immune system; eight to prevent or lessen the side effects of the one:

4am: Vital signs
8am: Daily weight and vital signs, Periactin (appetite stimulant)
9am: Busulfan (2 hour high-dose chemotherapy infusion)
10am:  Zofran (anti-nausea), Ursidol (liver protectant), Zantac (decrease stomach acid), Bactrim (antibacterial), Glutamine (mucositis prevention), Keppra (seizure prevention)
11am: Caspofungin IV (antifungal)
12 pm: Vital signs
3pm: Busulfan (2 hour high-dose chemotherapy infusion)
4pm: Periactin, vital signs
8pm: Vital signs
9pm: Busulfan (2 hour high-dose chemotherapy infusion)
10pm: Zofran, Ursidol, Zantac, Bactrim, Glutamine, Keppra
12am: Vital signs
3am: Busulfan (2 hour high-dose chemotherapy infusion)

Some of the meds will stop as her treatment progresses; there are at least six other medications, however, that will be added to this over the course of Jade's transplant stay.  Each with its own share of potential side effects. The busulfan, which is needed to destroy the immune system and ready Jade's body to receive donor cells, has an ever so slight risk of causing seizures in patients. Jade will receive two hour infusions of the busulfan four times a day for four days; she will be on seizure prevention medication for six days. We were told not to worry too much about this because it happens in a very small percentage of cases... Errr... You try sleeping.

Thank you for your continued prayers for Jade -- for her spirit, for her complete healing, for an uneventful but successful transplant.

The Wait is Over

Jade snapped selfies as we reviewed roughly 100 pages of documentation and participated in a three hour meeting with the Bone Marrow Transplant team on Thursday. All of her pre-transplant work-up tests and scans are back and thankfully they look good overall.  Dental exam showed no infections or disease. All of the blood tests were unremarkable. The GFR showed great kidney function. The bone marrow biopsy and lumbar puncture showed no evidence of disease in her bone marrow or her spinal fluid!! Two potential issues did arise from the cardio scans and the CT.  The cardio scans showed an ever so slight increase in left ventricle size and heart rate, a potential sign of stress or injury to the heart from previous rounds of chemotherapy. The CT showed compression fractures in Jade's spine, a sign of toxicity in the bones - another effect from the chemotherapy treatment.

While we were assured that these are not currently major concerns, it was significant enough for the team to decide to select an eight-day transplant conditioning regimen that consists of bisulfan and cyclophosphamide  and is "gentler" on the heart and bones (i.e. no total body irradiation). It also reaffirmed the position of not doing additional rounds of chemotherapy so that we could wait for an adult donor match to be identified.  Jade is strong and looks great, but chemotherapy is heavy stuff and will take its toll on her body. The transplant conditioning regimen will begin on Monday, June 23rd and be followed by a stem cell transplant using umbilical cord blood -- the best identified match Jade has to date -- on July 3rd. 

So, we brought Jade to the BMT clinic on Friday for her first infusion of palifermin, one of many medications Jade will be taking to prevent or curb some of the anticipated side effects of this treatment course. (Palifermin builds up the lining in the mouth and along the gastro-instestinal tract to prevent sores from developing.) We have truly cherished these past two weeks at home together as a family - not taking for granted the luxury of sleeping in the same bed together, sleeping in period, conspiring to ambush Daddy, waking up in a house that looks "lived in" by children, stepping outside and breathing in fresh air, running on bare feet, worshiping with friends... For now, we're making it our business to have one heck of a weekend before heading back to the hospital for what I pray will be an uneventful, yet unimaginable, experience.

Thank you for your continued prayers for Jade's complete healing and happiness, for our family, and for a cure. 

Pre-Transplant Work-Up

So, Jade has been knocking out her assigned pre-transplant work-up appointments one by one.  She has been most excited about being able to walk into the hospital and let everyone know that she is "just visiting." You know I'm going home, right? 

Here's what she's been up to: 

Complete Blood Count
Last Monday's oncology blood work looked great. ANC 1000. Platelets 280. Hemoglobin 8.2.

Dental Check Up
Wednesday's dental appointment went well. Jade was actually pretty nervous about going... of all things. She was a trooper in the end, but her anxiety was real. No infections, decay, cavities, or other areas of concern that could "complicate" recovery from a bone marrow transplant.

Echocardiogram & Electrocardiogram
Thursday's cardiology work-up was fairly uneventful.  This was actually the first time that we didn't hold her in our arms throughout  the Echo; she laid there on her own, watching Bubble Guppies. The Echo shows the structure, function, and blood flow of the heart.  The EKG shows how often the heart is beating as well as the size and position of the heart's chambers. Jade's heart is strong, but the scans did show a slight increase in Jade's heart rhythm and size of her left ventricle; this could just be her new baseline or it could be a result of one of the chemotherapy agents that is known to affect the heart.  All is still well within the normal range, so for now, they will just continue to monitor it with serial scans and we are not to worry.

Head and Chest CT Scan
Friday's radiology appointment was more fun than anyone could have expected. Jade sailed through it, not requiring the general anesthesia typically needed for kids her age. She appeared to enjoy every moment of her ride on the CT "waterslide" and having her picture taken in the "donut." We haven't received any news on this yet, but no news is usually good news... And we anticipate going over all of this at Thursday's conference.

Blood Tests
Jade and I visited the Bone Marrow Transplant clinic, which sits in a fairly secluded corner of the Hematology/Oncology  for the very first time on Friday to have a full blood screen carried out. They are checking her blood group, full blood count and clotting levels, specific viruses  and any signs of problems with liver or kidney function. All in all, it required about 15 vials of Jade's blood to be drawn on Friday. Again, we expect to go over all findings at Thursday's conference.

Bone Marrow Biopsy & Lumbar Puncture
Today, Jade had a bone marrow biopsy and lumbar puncture (spinal tap). The procedure went off without a hitch. The team collected the information they needed to determine if the chemotherapy Jade has received so far has been successful in destroying the leukemia and keeping it from returning to her marrow or appearing in her spinal fluid and central nervous system.  She also received intrathecal chemotherapy (injected into spine.) She woke up from the procedure requesting apple juice and honey nut cheerios, and asserting that she was ready to go home. Results pending.

Kidney Function
Jade is gearing up for her last few pre-transplant tests. Tomorrow, she will return to Radiology for a GFR test, which shows how well the kidneys are working. A dye is typically injected into a vein and then a series of blood samples are taken over three to four hours to see how well the kidney filters out the dye.

More blood tests on Thursday will conclude the pre-transplant work-up if the tests continue to come back favorably. So, that's been added to our prayer list - that Jade's body is in fact strong enough and ready for the transplant that will be her cure!

Thank you for checking in on Jade and for your continued support, encouragement, and prayers!
 

Busy, Busy, Busy

A sweet moment between sibs.

Our little girl is at home, doing fabulously, and has quite the two-weeks ahead of her. There will be LOTS of quality time with the family at home and we may even try to sneak in some non-peak hour, outdoor fun beyond the confines of our property line (Capital Wheel at the National Harbor, here we come?) A lot of time, however, will be spent with the team at Children's "really getting to know Jade inside and out" and making sure that her body is transplant ready, i.e. no infections or potential infections lurking ANYWHERE. That translates to about a dozen appointments and almost daily trips to the hospital. (Our normal 35-minute drive was about an hour and fifteen minutes, thanks to heavy rains and rush hour traffic this morning... but we jammed to Kidz Bop the whole ride, so no sweat.)

Still no success in finding an adult bone marrow donor match.  The outreach to the adult donors who are a potential 7/8 match for Jade has been wildly unsuccessful.  (Pick up your phones, people!) So at this point, Jade will likely be getting a stem cell transplant from an umbilical cord blood donation in early July.
We are truly thankful that this is even an option for Jade.  

Thank you for checking in on Jade, for continuing to get those cheek swabs in, and for your continued prayers and encouragement... (P.S. Jade & Co. is on Facebook now: www.facebook.com/superfriendsforjade. It may be easier to follow Jade there. :)

Now, let's see where we can pencil in some fun: 

Date: Monday, June 9^th     

TIME:  10:30AM                                                  Hem/Onc Clinic                 

TEST:  Follow-Up and Blood Work                        4th Floor East Tower

Date: Wednesday, June 11^th     

TIME:  8:30AM                                                  Dental Clinic                 

TEST:  Dentist Appointment                               First Floor Hospital Rm #1650

TIME:  5:00PM                                                  In-Home
TEST:  Follow-Up                                              Johns Hopkins Nursing

Date: Thursday, June 12^th 

TIME:    10:30AM                                               Cardiology Clinic

TEST:   ECHO/EKG and Cardiology Consult         3^rd floor Main tower

Date: Friday, June 13th

TIME:    8:30AM                                                 Radiology Department

TEST:  CT scans                                                2^nd floor Main building

TIME: 12:00PM                                                  Bone Marrow Transplant Clinic
TEST: Social Work Consult – Regina Tosca        4^th Floor East Tower

TIME: 1:00PM                                                   Bone Marrow Transplant Clinic

TEST: Blood work for BMT Testing                    4^th Floor East Tower

Date: Monday, June 16^th

TIME:  8:30AM                                                  HEM/ONC Clinic

TEST: Bone Marrow Aspiration                           4^th Floor East Tower
          Bone Marrow Biopsy
          Lumbar Puncture

Date: Tuesday, June 17^th

TIME:    10AM                                                    Radiology Department

TEST:  GFR                                                     2^nd floor Main building

TIME:    2:00PM                                                 Bone Marrow Transplant Clinic

TEST:   Child Life Consult                                  4^th floor East Tower

Date: Thursday, June 19^th 

TIME:    12:00 PM                                              Bone Marrow Transplant Clinic

TEST:   Consent conference                               4^th floor East Tower

TEST:   Blood Work

Days 24 & 25, Chemo Round 2 :: Can't Knock the Hustle

One of the five-year-olds on the unit who is full of personality set up a Nail Salon in her room. No joke.

$1.00 Top Coat
$2.00 Manicure
$3.00 Manicure with Design
Absolutely No Pedicures
Free for Patients

Jade was her first client.

She got her nails done just in time for ... a trip home!!  Jade's ANC jumped to 260 on Thursday and over 1,000 on Friday.  She is heading home for a well-deserved break before her next admission, which will likely be for her transplant.

We head back to the outpatient clinic on Monday for a follow-up visit and bloodwork (her hemoglobin levels are still trending low, so we hope they'll begin to rise on their own without a blood transfusion).  Next Friday, she will have another bone marrow biopsy performed to confirm that the chemo has continued to do its job and her leukemia is in remission and her marrow is transplant-ready.

But for now, we enjoy each other and remain ever faithful.

Thank you for checking in on Jade. Thank you for your prayers for Jade's match, for our family, for a cure. 

Day 23, Chemo Round 2 :: The Talk

Jade frequents the newly renovated Ronald
McDonald Family Room almost as much
as her beloved Art Room and Play Room!

We don't normally talk in percentages. Maybe because the numbers can be so scary, or because you can make numbers say whatever you want to. Maybe because we are already inundated by new vocabulary, treatment plans, diagnoses, side effects, medications, blood counts. I'm not sure if that's unique to this hospital, this unit, or what. But we don't talk percentages. (That has not stopped me from reading countless studies, books, etc.)

The doctors sat us down a few weeks ago for "the talk." The transplant talk. Heavy on information; light on statistics. We talked again about Jade's leukemia.  About how the fact that it has survived and resurfaced after five rounds of chemotherapy, after more than a year of being in remission means that the medicines that are currently available are not likely to make this leukemia go away forever.  That the medicines/chemotherapy that the oncology team is giving Jade are not strong enough to induce an enduring remission. That Jade's immune system is not strong enough to keep the leukemia in remission.

So, the BMT (Bone Marrow Transplant) Team laid out how we would go about replacing Jade's immune system after the doctors put her leukemia into remission with chemotherapy. It requires finding a suitable replacement, destroying the immune system that we gave her, and introducing a new system into her body.

Step One: Finding a Suitable Replacement
Identifying a donor for Jade consists of matching the Human Leukocyte Antigen (HLA) proteins that are on most of the cells in her body with those of someone else. It's not the same as blood typing. As a matter of fact, the blood type of the donor doesn't matter.  Bone marrow makes blood cells, so after the transplant, Jade would become the blood type of the donor.  8 HLA markers for Human Leukocyte Antigen are reviewed for bone marrow donations. 6 markers are reviewed for cord blood donations. The process for finding out if you are a match is very simple - only requires a swab of your cheek. You can find out more about how you can make a bone marrow or cord blood donation at www.bethematch.org.

Step Two: Destroying Current Immune System
Immediately before the transplant, Jade will be prepped to receive the donor cells with 8 - 10 days of high dose chemotherapy and potentially full body radiation. The chemotherapy and radiation that BMT administers is even more potent than what Jade has received to date.  Jade's system has been able to recover from the chemotherapy that she has received so far. Eventually, her body begins to make white blood cells, neutrophils, platelets, etc. again.  Jade's system, however, will not recover from the BMT chemotherapy. That is the intention... a clean slate ready to receive the donor cells and start anew.

Step Three: Transplant
Receiving the donor cells will look much like the blood transfusions that Jade has become accustomed to receiving.  A bag of the donor cells will be hung from an IV pole and enter Jade's body through her central line. 

Bone Marrow vs. Cord Blood

Still debating this low-tech visual aid for
a conversation of this magnitude... I guess
everything can't be a Prezi.

Jade's best chance for kicking this thing for good is to find a matching bone marrow adult donor, according to her doctors.  Adult marrow has been around the block, is used to fighting off disease, and would likely keep Jade safe from infections, etc. during the roughly 100 days post-transplant when she will be very vulnerable. It would also likely put up a winning fight against any solitary leukemia cells before they had a chance to replicate and take over Jade's marrow. Nip it in the bud, so to speak. The largest risk with adult marrow donations is the potential for graft vs. host disease, in which the donor cells recognize Jade's body as foreign and attack it - with symptoms that can range from a mild rash to organ damage.

If no matching adult marrow donor is identified, Jade will receive a cord blood transplant. Umbilical cord blood that has been donated by parents immediately after birth is frozen and stored in public cord blood banks. The advantage of a cord blood transplant is that these donations are more readily available and that the potential for graft vs. host disease is lesser.  These are "baby cells" that haven't grown up in a body yet and are less likely to see Jade's body as foreign.  The potential draw backs include that there are less cells available for the transplant, that they are baby cells that take a longer time to grow, and that they are not accustomed to fighting off disease or infection. 

There are tons of additional medications that Jade will be on pre- and post-transplant, many potential complications, numerous tests she has to take to make sure her body can handle all of this, but that's enough information for now.  Don't want to overwhelm you.

Thank you for checking in on Jade and for your continued prayers and support.  She is in great spirits, can't believe that there is another (two-year-old) Jade on the unit now, and looking forward to a break at home.

Today's Counts:
Hemoglobin: 8.5
Platelets: 27
ANC: 60