Monday, January 19, 2015

Bone Marrow Biopsy Day, What to Expect, How to Survive

I first wrote this in December of 2007 for AC, which no longer exists.

Bone Marrow Biopsy Day
What to Expect, How to Survive

One of the most common questions parents of a newly diagnosed Shwachman-Diamond Syndrome child ask is, "What can we expect when our child has a bone marrow biopsy?"

Most hematologist/oncologists perform the bone marrow biopsy (BMB) at the same time they perform a bone marrow aspiration (BMA). If you are unsure whether or not both a BMB and a BMA wil be performed at the same time, be sure to ask your child's doctor. Protocol for BMBs vary from hospital to hospital, but the actual BMB/BMA procedures themselves are the same. Some hospital protocols will allow one parent to stay in the OR or procedure room while the BMB is being performed, while others will allow a parent to remain in the rom until the child is put under.

Your child will be required to fast prior to the BMB procedure. Some doctors will allow clear liquids up to sic hours prior to the procedure, but this also varies from hospital to hospital. Be sure to ask your child's doctor what time to begin the fast and about clear liquids. You will also need to ask which medications your child will be allowed to take the morning of his BMB. You will likely be asked to arrive approximately two hours prior to the procedure. After you check in with the nurse or front desk, your child will have an IV placed and blood drawn for routine labs (or any extra labs that may be necessary). Some hospitals may require a pre-operative appointment before the BMB.

Soon after your child's IV is placed, you'll be asked to escort him to the OR or procedure rom. The anesthesiologist will go through a list of questions and examin yor child. At this point, your child will be put to sleep and you will be asked to leave the OR if hospital protocol so requires. The procedure takes about twenty minutes total.

The biopsy site, usually the iliac crest (in the back, just above the hop), is first cleaned with Betadine or something similar. The hematologist wil then inject a solution of Lidocaine aroud the biopsy site. The bone marrow aspiration needle with stylet is then inserted, penetrates the bone and enters the bone marrow cavity. The stylet is then removed and marrow extracted using a syringe. Once the marow is extracted, the needle is removed. For the biopsy portion of the procedure, a different needle is used. Once the biopsy needle is inserted and hits bone, the stylet is removed. The biopsy needle is then moved in an alternating clockwise-counterclockwise motion. The biopsy needle reminds me of an oldfashioned corkscrew! Once the biopsy sample is obtained, the nurse or doctor will apply gauze to the site with pressure to stop any bleeding. A sterile dressing is then placed over the biopsy site and should remain in place for 24 hours. Following the procedure, your child will be moved to the recovery rom. Once he starts to wake up, you will be called back to be with him.  Once he is able to sit up and drink, his IV will be removed and you will be discharged shortly thereafter.

Your child will likely be a bit unsteady on his feet at first, but that will improve quickly. The biopsy site will cause him to have mild to moderate pain for a day or two following the procedure. The doctor will give you instructions on what medications can be used for pain management. My boys have had some 25 plus BMBs each and we have never had any complications arise. If you notice excessive bleeding or the biopsy site seems to be infected, contact your child's doctor immediately. 

Survival Tips

Over the years, we have developed what we call our "Bone Marrow Biopsy Day Strategy". Hopefully, some of what we have learned over the years will be of help to you. 

If you have a child who has never had an IV placed or who is afraid of getting an IV, you can request a special numbing cream such as EMLA be used. The cream is placed on potential IV sites one hour prior to the IV being startd. Keep in mind that some children might find it worse using EMLA because of the hour waiting with the EMLA causes them anxiety. My youngest would panic the entire time the EMLA was on, which made BMB day worse for him. 

The night before the marrow biopsy, we usually allow our boys to stay up later and allow them to eat something just before bed. This helps because they will sleep until just before leaving for the hospital and won't miss not going through their regular breakfast routine. We also remember to bring along some of their favorite snacks and driks to the hospital so that they can eat as soon as the doctors allow. Some hospitals will offer your child a breakfast or lunch tray after the procedure. 

Bringing stuffed animals or a favorite toy along is also very helpful. If your child likes to play doctor, a toy doctor's bag with pay doctor tools can be a great coping tool. Some hospitals will give children splints, tape, IV tubing and other goodies for your child's doctor bag. It can never hurt to ask. Keep in mind that some hospitals will not alow any personal ites in the OR, while others will allow one or two. You'll need to check hospital policy ahead of time, so as not to cause your child any undo stress if his favorite toy can't come along with him to the OR for his procedure. 

If you have a child who has to have repeat bone marrow biopsies and he is scared, you might consider purchasing an anxiety workbook to help your child cope with medical procedures. You can even make your own "Bone Marrow Biopsy Day" book. We made a book when my kids were little and had it published later. Several child life departments use the book, too! Children want to know what happens while they are asleep, and taking pictures is a great way to show them. In our case, we have taken many pictures over the years and also had a wonderful doctor who took pictures for us during the entire procedure. Our book was a hit not only with Child Life, but with the entire staff! Many signed a copy my boys brought with them to their bone marrow biopsies. 

For many children, like those with Shwachman-Diamond Syndrome, repeat medical procedures is a normal part of life. As parents, we can help our children cope by preparing ourselves and equipping the with the tools they need to cope.

You can order my book for the Nook here.

Here is a video I put together from one of my boys' BMB days:

Here is a interactive online game that helps children discover the role that bone marrow plays in the body and why bone marrow aspirations and biopsies are important

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