“A Perfect Match” Part Two

I’ve heard so many rumors about bone marrow transplants…”Its excruciating!” “They crack your bones to get the marrow out!” etc etc. So when the bone marrow transplant coordinator at Chapel Hill’s Children’s Hospital warned me that the video for this transplant may be…somewhat uneventful… I was surprised…but glad!

 A reporter is usually never excited about getting “boring” video…but one of my goals for this story was to dispel the myths surrounding BMT (bone marrow transplants) and to encourage people to become donors.  What better help could I have gotten then to have video that showed how seemingly uneventful and NOT scary getting a bone marrow transplant is!

 Here’s more background…

 When I arrived at the hospital, Janaya was already there…and already crying. This was her first time in the hospital and everything was sinking in. We cooled off together in the pre-operative area (believe me…I was pretty nervous too…) and then met with her doctors.

 Doctor Jaroscak and the nurses gave her a magic wand and Barbie backpack. After that…little seemed to matter to Janaya. She spent the next hour trying different hand techniques with the wand to try to make us disappear. While she was busy with that…the recreation nurses were busy trying to tell her a picture book story about her surgery before wheeling her in a wagon to the O.R. (she was really only interested in the wand…and I don’t blame her!).

 The O.R. is an intimidating place. There are doctors with masks everywhere and all sorts of machines that make loud noises. But with mom at her side…she really didn’t seem to mind! The laughing gas went on…and soon her little feet fell to the side and she was out.

 Its the hospital’s policy to not allow “media” to film inside the O.R….but here’s basically what happened and what *would* happen in any bone marrow donation….

 1. Under general anesthesia, doctors make several small incisions through the skin over the back of the pelvic bones (you know those two hard knobs/dimples in your back? The “posterior-illiac crest”)

 2. They take a long hollow needle and inject it into the area where soft tissue is covering those knobs. Doctors then draw out the marrow.

 3. They may make more incisions for insertion (2-4) depending on how much marrow they are able to harvest and how much they need.

 4. In some cases, the marrow stem cells must be treated before the transplant is done.

NOTE: This happens if a donor only has partially matching human leukocyte antigens (HLA…the DNA markers on the blood cells that match up donors). In that case the stem cells will be enriched and the T-cells which could cause graft-versus-host disease are removed. Because Janaya is a perfect matching donor..this was not necessary. The marrow went from the syringe…to a bag…and then to Denise.

 When Janaya woke up, she was a little achy…but nothing bad. She had two bandages on her back where the needles went and those can be removed in a matter of days.

 We then headed upstairs for the transfusion.

 Denise still had her hair but her demeanor was very different. She was exhausted…and for good reason.

 The chemotherapy had wiped out her blood cell count, leaving her with very little immune system (white blood cells make up your immune system). The treatments had also given her nausea, vomiting and mouth sores which made food completely uninteresting. She’d lost a lot of weight…at that point she must have been below 100lbs and she was skinny to begin with!

 When doctors arrived with marrow in hand..we were all so excited for that moment. In just minutes…her live would be saved. The bag of marrow looked like it should have been GLOWING with magic. I wanted her to see everything but she was too exhausted…she just pulled the covers up and drift off.

 Janaya was also wheeled in. Dr. Juroscak presented her with a Certificate of Donation and we all started cheering…and Janaya leaned over and fell asleep!

 Meanwhile, my camera was flying all over trying to capture every second.

 Just like you saw, the bag of marrow went up onto the I.V. pole and its contents dripped right into her central line (an IV line that inserted into the chest). Within an *hour*, Dr. Juroscak said the stem cells would migrate right to where they needed to be…her hips….where they would get to work to produce a brand new bone marrow factory. If that doesn’t amaze you, nothing will…

 In about 20 days her blood cell count should start to come back up again. For the next 100 days, doctors will be watching for signs that her body is rejecting Janaya’s marrow. There is a 10-20% chance of serious complications including: liver irritation (which she has had before), infection (from low white blood cell counts) or if Janaya’s cells to don’t engraft (Denise’s body rejects them). Because Janaya is a full match though, the odds are in her favor. Plus, bone marrow transplant has a lower risk of host-vs-graft disease (rash, diarrhea).

 To help prevent any complications, Denise will take immunosuppressive drugs (drugs that inhibit the reject or organs/tissue).

 Interesting tid-bit: Since donated bone marrow cells create a brand new B.M. factory…recipients take on the blood type of their donor. Also, because the patient’s immune system is wiped out…they will have to be vaccinated AGAIN once they start to develop a blood cell count. Just like being a little kid again…

 I headed home after the transplant but I have talked to Valeria often since then. She said that Denise has now lost all of her hair but is still in good spirits. Janaya was home the next day and jumping around like she usually is! Valeria is still trying to make it all work between Chapel Hill and home, where the rest of her kids are. She says she wont stop worrying about Denise until they know 100% that the donation worked….and that Denise is leukemia free.

 I learned SO much about both leukemia and bone marrow donation from this story. I had no idea donation was so easy! There are 11 million registered donors but that’s not enough….finding a perfect match is very difficult (and having one dramatically increases the chances of success). Its even harder for minorities because there are fewer donors. Getting on the registry is simple..they just swab your cheek. It costs $50 to be on the registry. Let me explain why you have to pay:

 When donation coordinators go searching through the registry…they sometimes have trouble locating matches because donors change their address, phone, email, etc. There’s no time to waste in these situations…so they need to know that donors are going to keep up with their own registry. To give them a reason to stay committed to it, they charge a fee…to incentivize the commitment.

 Its one thing to go swab your cheek to add your name to the list…its another to take a day off of work and be put under anesthesia. They need people on the registry who are serious about their donation and who will not back out if called. Adding a fee helps to weed out those people who are not committed to donation. PLEASE do not let this keep you from doing it! As you saw…you really are saving someone’s life when you donate. If you are interested in donating…just contact your local hospital…they have donation drives frequently.

 www.marrow.org and http://www.cancer.gov also have more information about donation, risks and side-effects.

 

There are other ways that donations can occur:

 1. Peripheral blood stem cell (PBSC) donation:  blood-creating stem cells are also found in your peripheral blood, circulating around you. Donors are injected with filgratism, a drug that moves these cells out of the marrow and into the bloodstream. Blood is removed through a needle in the arm and a machine separates out the stem cells. Its very similar to platelet donation.

 2. Umbilical cord blood donation: the blood collected from the umbilical cord and placenta is rich in blood-creating cells. People can donate their child’s umbilical cord blood or store it for themselves or a family member. This type of blood use used when a match is needed right away or someone cannot find one because umbilical cord blood is stored and readily available.

 As I mentioned in the story…Denise had high-risk factors because of her type of leukemia (hypodiploid…meaning Denise has slightly fewer than a full set of DNA chromosomes) and she needed a bone marrow transplant. 85% of all kids are cured with just chemotherapy, unfortunately, this wasn’t Denise’s case.

 I spoke to Valeria last night after she saw the story. You have no idea how nerve-racking these stories are for me (or probably, any reporter). There was so much to consider…How does Denise want HER story told? How do I explain complicated medical terminology while still making this interesting to viewers?

 Valeria says they loved the story…and I’m thrilled.

 Denise is still feeling very sick. She’s adjusting to her new ‘do (or really…lack there of…) and she can’t wait to go home.

 I can’t wait to see them all again! For me, I’m headed into the hospital myself for the next few days (or weeks). I too will probably be bored to tears most of the time so I will have my laptop with me, should anyone have any further questions about Denise’s treatment or how to become a donor. My email is croman@wect.com.

 I also hope you will get in touch with Denise and send her well-wishes. You can go on Facebook.com…search the name “Denise Hale”…and send her a message.

 Finally, if ever you think your problems are just too much to handle, or the sky is falling down…you can easily “get a grip” by listening to stories like Denise’s or walking into a children’s cancer ward. I promise you that being in the bone marrow transplant unit at UNC turned my little world upside down and put may things in perspective. These kids are so little…and are fighting a BIG fight. If you have the opportunity to help one of them out by donating marrow…I hope you will.

 

 

 

 

 

 

 

 

 

 

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