28 Feb 14 – Surgical plan

28 Feb 14 – Surgical plan

We have certainly learned a lot since we started looking into limb salvage surgery for Esme. More than we really wanted to know. We contacted and consulted with surgeons from Gainesville, FL, Boston, MA, Salt Lake City, UT, Atlanta, GA, New York City, NY, Philadelphia, PA, Houston, TX, and Washington, DC. There were several options discussed, and each option had 2 things in common: first, most of her left humerus must be removed, and second, it must be rebuilt. Of the options we were given, the following three were mentioned the most:

Option 1 uses a metal implant.

Option 2 uses an allograft (donor bone).

Option 3 uses an allograft and vascularized fibular graft.

Each procedure has its own advantages and disadvantages. After many hours of research and many phone calls, emails, and discussions, we have decided to go with option 3. The surgeon we are using is Dr. Mark Scarborough with the University of Florida Orthopaedics and Sports Medicine Institute. Dr. Scarborough comes highly recommended by other surgeons and by a family in Atlanta whose daughter had a successful rotationplasty performed by Dr. Scarborough.

Vascularized Fibula

Without getting into the fine details, basically the limb salvage surgery involves removing the cancerous portion of the humerus plus a safe margin. The main goal of limb salvage of the upper extremity is keeping good function to the hand and the elbow. Most of Esme’s left fibula will be removed, leaving enough bone at the ankle to retain proper function. The section of fibula will be implanted with allograft bone and grafted to the remaining portion of her distal humerus.

There were several reasons we chose this option. One reason is growth. With options 1 and 2, there is no possibility of growth. There are expandable metal implants, but after reading about some of the complications we decided against this option (and yes, we realize there are complications to every procedure and no guarantees). And with option 2, the allograft bone is essentially dead bone and will not grow, and can weaken over time and is easily fractured. With option 3, there is the possibility that the fibula will continue to grow, both in length and girth. Since the fibula is Esme’s own bone, it should graft with her remaining section of humerus with fewer issues.

Another reason we chose option 3 is functionality. When the allograft bone is used, the connective tissue is still attached to the bone. The surgeon is able to reconnect the remaining muscles in the shoulder so Esme will still have some shoulder function. She will probably never be able to raise her left arm over her head, but raising her arm to 90 degrees should be possible.

We feel relief that we finally have a definite plan, but we also dread the fact that Esme has to go through all of this. More details as surgery approaches.

While seeing Dr. Scarborough we had a repeat X-ray of Esme’s arm. In the image below, you can see her film from December on the left that clearly shows the osteosarcoma. The image on the right is from Dr. Scarborough’s office. As you may recall from a previous post, Esme’s latest MRI indicated a pathologic fracture which is noted in the image on the right.


Update – 23 Feb 14

Update – 23 Feb 14

Esme is wrapping up another chemo admission like a champ! We will go home tonight as long as her methotrexate level is low enough. We got here Wednesday, spent the morning in an orthopedic office discussing “pancakes” (our family code word for surgery because Esme doesn’t like the sound of the word surgery!), and then it was off to Solid Tumor Clinic to check her labs so she could be admitted for her methotrexate.

She only vomited a few times right after the infusion – and sadly lost some really yummy salmon from Marlows to the barf bucket! 🙁 She’s really not much of an eater during chemo, but Mamo and Opa came to the rescue MANY times, fulfilling all of Esme’s requests for what she did want. It’s good to have grandparents who love you! 🙂

Esme also had a repeat echocardiogram during this admission to see how her heart was holding up to the doxorubicin. The echo showed no significant changes from her baseline echo. This is good news, but we will continue to keep a close eye on this. It really worries us because we have read about a couple other kids who have made it through chemo and surgery only to end up with congestive heart failure.

Egleston has it’s own radio studio and had some special visitors this week – Fifth Harmony from the X Factor. Esme got to meet them and get autographs! It was nice of them to stop by and see the kids.

She surprised me this admission by showing me how much she REALLY hates getting her central line flushed. She chose to have her blood drawn from her arm daily for her methotrexate level checks instead of being flushed to have the blood taken from her line without any extra needle sticks! She doesn’t cry or flinch and truly prefers having a needle stick to the vomit inducing saline flush smell/taste. Wow!

It seems that Esme’s worst side effect from the methotrexate is skin blistering and then sloughing from her feet and hands. The first couple of rounds she complained of a little pain, developed some redness on the bottom of her toes, heels, and on the tips of her fingers. These blistered up and peeled off when we got home but wasn’t too bad. This time, she is really hurting. Her feet and hands look terrible! She can’t walk which makes the crazy number of bathroom trips because of the high rate of IV fluids lots of fun… And, she can’t write or draw to entertain herself because it hurts to hold the pencil or crayons… Thank goodness her fingertips are good – I’d hate to interfere with her texting and social life! 🙂

Surprisingly, through all of this, Esme smiles at her nurses and her visitors and keeps her upbeat attitude! She is truly inspiring.

Update – 14 Feb 14

Update – 14 Feb 14

Today was Esme’s appointment with Dr. Scarborough, the orthopedic oncologist in Gainesville. We got lots of information about what is involved in Esme’s surgery, but hearing it made us want to throw up (Esme and Maslin were coloring in the room next to us). We spent the rest of the day in St. Augustine. It’s late now but we will update again soon regarding her surgery…

Update – 13 Feb 14

Update – 13 Feb 14

Esme’s counts are headed in the right direction, so she is getting discharged. Her platelets were really low last night so she got a unit of platelets. Leaving from here to head to Gainesville, FL for a surgical consult tomorrow.

The results from Esme’s CT and MRI came back. Her MRI showed a pathological fracture had developed in her arm. We have to be super careful not to let this crack turn into a through and through break, that will complicate her surgery and the rest of her chemo treatment. We have another surgery consult early next week before her next admission for MTX, so because of all of this, Esme and Maslin are going to miss the coastal trip they were supposed to go on with their school. We’ve reassured them that we would make it up to them and that they always have the coastal trip next year to look forward to.

Luckily the temperatures are in the 40s and the roads appear thawed, so it’s off to Gainesville we go!

Update – 11 Feb 14

Update – 11 Feb 14

Well, Esme has had quite a busy day today. Antibiotics, labs, chest CT, MRI. She’s done well with all her tests, including the MRI. To see what an MRI is like for yourself, do this: get a coffee table, place it on a hard surfaced floor. Lay down a thin blanket under the coffee table, lay face up on the blanket. You can also fold another blanket and put it under you head. Now, lay there completely still for 75 minutes. Then have someone put a loud vacuum cleaner right next to where your head is and randomly turn it on and off, leaving it on anywhere from 30 seconds to 5 minutes at a time. That may come close to what she had to do today

Dr. Woods came in during rounds and said she’s looking better, but her labs are still bottomed out. White count 0.93, platelets 14, ANC 0.01. She got a unit of blood last night so her hemoglobin-gloutin-globin and hematocrit were a bit better (9.3/26.2). We’ll see how her labs are when they draw at 0430…