March 29, 2013

BMT 101: Conditioning


Two weeks ago I talked all about the process of finding a bone marrow donor. Finding a donor, and knowing that you or your family member has an actual shot at life, is one of the best moments in the entire transplant process. It is such a high to know that someone is willing to give the gift of life.

Unfortunately, that high doesn't last for long as the next steps are some of the hardest on the patient.

So what comes next? Conditioning.

Conditioning is the phase before a bone marrow transplant that prepares the recipient's body for their donor cells.


Basically, conditioning is used to empty the patients "defective" cells so that their body can be filled back up with healthy donor cells.

There are so many different conditioning regimes, all based on the specific diagnosis of the patient. Conditioning typically starts 5-10 days before the actual bone marrow/ stem cell transplant. Recently, there has been a shift to reduced-intensity conditioning regimes. This is easier on the patient as less intense chemotherapy drugs are used. However, our transplant doctors have determined that a myleoablative regime (or intense, high chemo regime) is the best option for CAMT patients such as Kate and Will.


All bone marrow transplant patients receive a "road map" that details the medications they will receive and when it will be given. In the BMT world, days are counted a pre and post transplant. Conditioning obviously occurs pre-BMT and is labeled as day -xx. As of now, Will's roadmap will mimic Kate's which means he will be admitted on day -10 (or 10 days before BMT) and be given medications such as anti seizure drugs to prepare his body to start conditioning chemotherapy on day -9. When we get Will's official road map, I will post it but as of now, he will receive 4 different chemotherapy drugs.


Each of the drugs has specific side effects during the infusion period as well as longer term side effects such as hair loss, skin breakdown, and mucositis. They can also impact major organs such as the kidneys, lungs, liver, and heart. Side effects vary person to person however, in our experience, Campath is by far the worst drug of the mix. Kate had an awful time with Campath and I can honestly say I am dreading Campath infusions more than anything else.

Another aspect of the conditioning period is input verses output. Cytoxan needs to be flushed out of the kidneys within a certain amount of time and the best way to do this is to closely monitor fluid intake and output. That means diaper changes (so diapers can be weight for Is and Os) occur every two hours around the clock in order to aide output if needed.

Obviously there are many more aspects of conditioning; these are just a few of the things I know we will deal with.

The day before transplant (day -1) is typically a day of rest, meaning no chemo is given. Day 0 kicks off the post transplant cocktail of meds as well as the actual receiving of donor cells. We'll talk about all of that next week!

As always, feel free to send me any questions you may have! I struggle to write these posts so that people unfamiliar with the BMT process can follow along - it is so easy for me to get way too technical or detailed as I know way more about the transplant process than I ever hoped I would have to learn!

March 27, 2013

Surgery...again...

On our way, waiting to be taken back, asleep before heading to the OR, finally home!

I honestly can't remember if I blogged about the two surgeries Will had earlier this month. I know I mentioned them on the blog FB page, twitter, and instagram but I think I may have forgotten to actually blog about it.

Will had two surgeries on March 5. He was in the OR for about 2 hours and immediately after surgery, we thought all was well. He woke up happy, waving and smiling at everyone in the PACU. Unfortunately, one surgery (his bone marrow biopsy) was not successful, and the other surgery (that we are not openly discussing for privacy reasons) led to some post surgery/ recovery issues.

Thankfully, as of now, Will is finally healing and it looks like surgery #2 will end up ok, despite several setbacks and scares.

However, surgery #1, the bone marrow biopsy, has to be redone. In basic terms, a baby's bones are incredibly soft when born and harden as the get older. This can lead to challenges when obtaining an adequate sample of bone marrow during a biopsy. The marrow is squishy/ sponge like and when a doctor is doing a biopsy on a patient with harder bones, it is very easy to tell when the biopsy probe/ needle reaches the marrow (bone marrow biopsies are done by "feel" not by sight).

Unfortunately, Will's bones were still pretty squishy and it was nearly impossible for the surgeon to know when the bone stopped and the marrow begun. The sample that was taken was predonminately made up of actually bone and not a marrow. We are hoping his bones have hardened up a bit more in the past month and are praying a proper sample taken for biopsy next week!

As of now we do not have an official surgery time. Will has an appointment on the BMT floor at 8:30am for blood counts and a possible platelet transfusion. If he needs platelets, he will receive them before the biopsy. If he doesn't, we will head to the outpatient surgery floor as soon as his counts are back. I'm mentally preparing myself for a long day at the hospital since we won't have an official surgery time until the morning of. I am also preparing for an extremely unhappy baby as Will wont' be able to eat/ drink from midnight until after surgery.

We would appreciate thoughts and prayers as Will deals with another surgery. Hopefully this will be his second to last time in the OR before starting chemo. His next surgery will be his central line placement a few days before admission/ chemo begins.

If you want relatively live updates on Tuesday, you will be able to find them on twitter or the blog FB page!

March 19, 2013

Treasuring Our City

 


For a long time now, I have longed to live somewhere else.

We live in downtown Houston. In the heart of the city, social life, and bars. We live in the best neighborhood for singles and DINKs (double income no kids). When Alex and I bought our home back in 2007, it was perfect. Perfectly located. Perfectly sized. Perfectly laid out for entertaining our friends.

It was not nearly as perfect when sweet Kate came along. However, it was still pretty amazing.

Then Will unexpectedly joined our family and I started longing for different. A bigger backyard. A true guest room. A play room. A neighborhood with family friendly neighbors not white collar drug dealing felons like the one that lived next door to us several years ago. A living room that was not covered in primary colored toy vomit.

Some days that picture perfect home was in a suburb of Houston. Other days it was back in Mississippi - closer to dear lifelong friends, family, and our alma mater. But it was always away from the city.

However, a few weeks ago, while walking through Herman Park with my little family, feeding the ducks, kicking the nutria away, flying a Cinderella kite, and watching my child, who has spent more of her life in isolation than out exploring the real world, interact with other children as if she has always been exposed to kids her age, I had an epiphany.

This is an amazing place to raise our children.

Our kids live 10 minutes away from a phenomenal zoo, a world renowned Museum of Natural Science, a breath taking Paleontology Hall, parks, nature centers, cultures. Kate can properly identify animals like Bongos. She thinks the "di-sors" at the Museum of Natural Science are hers. She stops and admires the girls taking their Quinceanera pictures and is amazed by seeing real princesses.

She knows all of these things, not because I am sitting her down and teaching her at home, but because she is immersed in her city. Absorbing all it has to offer. Living and breathing this amazing place we currently call home.

I was born and raised in New Orleans, a city that, to most, leaves much to be desired. But for me? When I think of my city? I think of Saturday morning ferry rides across the Mississippi River with my dad to enjoy beignets at Cafe du Monde. I think of looking up to see the boats float down the river because I lived below sea level. I remember Mardi Gras and know that it is actually extremely family friendly. I think of the Audubon Zoo and the white alligators. Carefree rides on the street cars simply because it was fun. I think of muffalettas from Central Grocery, picking off the olive salad because I was crazy and didn't like it until I was much older, and throwing it to the pigeons in Jackson Square.

Kate and Will are not going to remember the less than perfect layout of their first home - but they will remember how awesome it was to be at the zoo in 10 minutes.

They will not remember just how tiny their backyard was - but they will remember the garden we planted and the thousands of times they were pushed in their swing.

They will not remember the crazies that lived down the street (ok maybe they will remember them but stick with me) - but they will remember the multiple languages overheard at the park, the various cultures they were exposed to, the diversity they were surrounded by.

Simply put, they will not dwell on how imperfect our life in the city was. They will cherish the opportunities and experiences they were given because of their time spent here, exposed to so many amazing things.

So for now, I am going to stop thinking about the grass being greener in the suburbs, and start treasuring what downtown Houston has to offer my kids and our family. This is such an amazing city to be able to claim as home, and I hope and pray my kids truly absorb and remember all of the wonderful things this beautiful city will continue to offer them!

March 18, 2013

Bloglovin' is where it's at



I'm sure most of y'all have heard by now that Google Reader is going bye bye come July. If you are anything like me, you pretty much stuck your head in the sand and ignored this fact for quite some time.

I've finally come to terms with the fact that Google Reader is, in fact, going away. I can no longer play dumb and tell myself it is just some dirty rumor.

Over the past few weeks I've seen several people mention Bloglovin'. Bloglovin' in a new blog reading platform that is SO user friendly. The best part, in my opinion, is the great smartphone app. It's way too easy to click through my unread posts at 4am while Will is up refusing to sleep.

I really wish I would have made this switch a while ago!

So, if you are looking for a Google Reader replacement (that is actually way better than Reader ever was), head on over to Bloglovin' and sign up today! Right now Bloglovin' will actually import your Reader into their platform. You literally make an account, press a button, and have all of your blogs neatly organized right in front of your face. Makes things easy peasy!

If you want to keep in touch with us, especially as Will approaches transplant, simply click the badge below and start following The BMT Blog!! I also have a Bloglovin' follow button on my side bar and will have a Bloglovin' social icon up on the right with all of my other social icons very soon!


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I was not compensated for this post at all. I simply love what I see over at Bloglovin and wanted to make sure my readers have a way to keep in touch with us come July!

March 15, 2013

BMT 101: Finding a Donor



Disclaimer: I am not a medical professional. I am not a trained donor coordinator. I am simply a mom who has gone through the process of searching for a bone marrow donor twice. I am sure each donor center does things a little differently. I am simply documenting the process we went through, at Texas Children's, and with the National Bone Marrow Registry when searching for Kate and Will's donors.

This week is all about finding a donor! While the actual treatment phases are when a transplant patients life is saved, this step, the act of finding a match, is quite possibly the most important step of the entire bone marrow transplant journey.

Without a match, a transplant cannot be done. A life cannot be saved. A family cannot continue as the family unit they know and love.

I'm going to break this process up into four sections - HLA typing, what goes on with the patient while searching for a donor, what goes on with the donor as they are screened as a possible match, and the decision. Obviously I do not have personal experience with donating marrow so any information regarding what happens on the donor's end is what was explained to us as we sat and waited to hear if either of our kids had a match.








Human Leukocyte Antigen typing is what is used to match bone marrow transplant recipients and donors. According to the National Marrow Donor Program (NMDP), "HLA are proteins - or markers - found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not." There are multiple HLA "match points" and the more points a recipient and donor match on, the better. The closer the match, the higher the chance the patients body will accept the donor cells because the body "recognizes" the markers present in the donor cells.

Every individual has HLA markers present in their body. Half of these markers are inherited from your biological mother, the other half inherited from your biological father. Because HLA markers are inherited, there is a 25% chance that a full biological sibling of the patient will be an HLA match to donate marrow.  Parents and extended relatives have a small chance of matching patients.

While the NMDP sets a minimum threshold of 8 match points, most donor centers look at HLA matching on a 10 match point level. I am not a scientist and will not even begin to explain these 8 or 10 points. If you are interested in reading a great overview of this, feel free to visit the NMDP page about HLA typing (link).

I'm sure many of you are asking "Why is HLA matching so important"? There are several reasons why a good HLA match is such an integral part of a successful bone marrow transplant. There are three main reasons why a strong HLA match is so important.
A successful transplant means the patients body accepts the donor cells. As I mentioned above, the more match points the patient and donor have, the more likely their body is to think the donor cells belong. The remaining two points, engraftment and GVHD, all relate to a successful transplant but these things happen after the patient receives the donor cells. I will be discussing them in more details in the next few weeks! Today we are just talking about finding a donor!

There are other factors to consider when selecting a donor (viral status - CMV and EBV are a few looked at - age, health, blood type) but these factor are simply "extras". HLA is the most important factor when finding a match.

Now that y'all understand the basis of matching a patient and a donor, we can talk about what happens on each end as a match is made!






As soon as a bone marrow transplant is deemed necessary, the patient is HLA typed. At the same time parents and siblings are typed as well. The typing process can take up to three weeks for various reasons. We learned how long the typing process can take when we were waiting on Kate's typing to come back. I blogged about my frustrations regarding this in June 2011!

As stated above, the chance of a parent matching is extremely slim. However, there is a decent chance siblings will match. If a sibling is identified as a good HLA match, the patient moves to the next phase of the BMT process, prepping for transplant/ conditioning.

However, 70% of transplant patients do not have a familial donor and have to reach out to the national and International marrow donor programs to find their life saving match.

(Now is when I will start relaying how TCH handles the matching process. This may be different at various donor centers.)

As soon as we discovered Alex and I were not matches for either of our children, we started working with a transplant coordinator to find a donor. An initial pass is made against the national and international registries.

Side note: When people join the registry, they are not fully typed. It is extremely expensive to conduct a full HLA typing so several major HLA markers are used to register donors.

A pool of potential donors is identified, and ranked. The top pool of donors (typically no more than 6 at a time) are "activated" as potential donors and contacted for additional testing.

As soon as this happens, the patient, and their family, is left to wait for a donor to be identified. This can take several months.


After a donor joins the NMDP (I will talk all about joining the registry in a few weeks), they are placed in a database for all potential donors. A donor can sit on the registry for 15+ years before being contacted as a potential donor, they may never be contacted, or they could get "the call" a month after joining. There is simply no way of knowing when one might be called as a potential match.
 
When a donor is identified as a potential donor (as I mentioned above), they will be contacted via phone, email, or letter (proof that it is SO important for donors to keep their contact information up to date). At this time it will be determined if a donor is still eligible, and willing, to donate. If they meet the criteria, potential donors will need to have additional blood work done. This blood work is the detailed HLA typing as well as other viral/ infectious disease blood work.
 
After a donor goes in for additional testing, it could be 4-6 weeks before they hear anything. This is due to the fact that the patients doctors want all potential donor testing in (remember up to 6 donors can be "activated" for one patient) before selecting a donor. As soon as all testing is back, the patients team of doctors will meet and make the official decision regarding a donor.
 
If none of the potential donors are acceptable matches, this process will continue with donors on the registry until a pool of potential matches is identified.
 
As soon as all potential donor lab work is back, the patients team of doctors will round table to discuss all matches. A perfect match is the best case scenario but if no perfect matches are identified, other donors will be considered and possibly selected.
 
If multiple "10 out of 10" matches are identified, things such as CMV status, age, etc will be considered. For whatever reason, younger donors tend to be more "proven" so a younger donor (20s) will always be preferred over an older donor (40s+).
 
When we were searching for a donor for Kate, we ended up with 3 perfect HLA matches. This was incredible and allowed Kate's doctors to find a young (24 at the time of donation) CMV negative (Kate is CMV negative) donor. It was much harder to find a match for Will but thankfully we ended up with one perfect donor! Will is CMV positive which made his donor CMV status unimportant. It is best to not expose a CMV negative patient to someone that is CMV positive.
 
Once a potential donor is named as the official donor, they are contacted and must agree to donate. If they agree, the donor will begin the next round of testing which includes a physical and additional lab work. If everything checks out, the individual is ready to donate marrow or peripheral cells. Y'all will hear all about donating (as of now I have a peripheral cell donor lined up to guest post) in a few weeks!
 
Next week we will talk about the conditioning phase - or what happens as a patients body is prepped for receiving their life saving cells!
 
As always, if you have any questions about the process of finding a donor, shot me an email and I will get back to you as quickly as life with two kids allows!


March 13, 2013

Blog Sale Link-up: Will's Closet

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I am linking up with Leslie today for the second blog sale link up! I am hoping I can clean out our closets to make room for all of the precious spring/ summer items I have landing on my doorstep on a daily basis! I will be breaking my things up into two posts - Kate's Closet and Will's Closet. I have so many things I just thought this would be easiest!



* All items are listed in size order, smallest to largest
* Unless noted in the item details, items are in excellent used condition meaning no stains, no signs of wear, etc.
* All items come from a smoke free home
* All items have been washed on delicate cycles and hung to dry
*Shipping is NOT included in listed price. Shipping is $2 for the first item purchased and $1 for each additional item
 



*Email me (lindsey.boggan@gmail.com) the following (w/ blog sale in the subject line):
* Sale item #
* Paypal Email
* Your address if not listed in Paypal

Comments will NOT be accepted as a means of purchase. Only emails with the proper information will be used for sale purposes. All invoices are expected to be paid within 24 hours. If not pain within the specified time frame, the next buyer will be given the chance to purchase the item.

I will do my best to update this post as items sell. I apologize if I am not prompt in updating sold items. Life at home with two kids is pretty demanding!














 





 


 
 





























Blog Sale Link-up: Kate's closet






I am linking up with Leslie today for the second blog sale link up! I am hoping I can clean out our closets to make room for all of the precious spring/ summer items I have landing on my doorstep on a daily basis! I  will be breaking my things up into two posts - Kate's Closet and Will's Closet. I have so many things I just thought this would be easiest!



 
 
* All items are listed in size order, smallest to largest
* Unless noted in the item details, items are in excellent used condition meaning no stains, no signs of wear, etc.
* All items come from a smoke free home
* All items have been washed on delicate cycles and hung to dry
*Shipping is NOT included in listed price. Shipping is $2 for the first item purchased and $1 for each additional item
 
*Email me (lindsey.boggan@gmail.com) the following (w/ blog sale in the subject line):
* Sale item #
* Paypal Email
* Your address if not listed in Paypal

Comments will NOT be accepted as a means of purchase. Only emails with the proper information will be used for sale purposes. All invoices are expected to be paid within 24 hours. If not pain within the specified time frame, the next buyer will be given the chance to purchase the item.

I will do my best to update this post as items sell. I apologize if I am not prompt in updating sold items. Life at home with two kids is pretty demanding!




 
 






















Happy shopping, y'all!
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