 Update - Wednesday, May 14, 2008 7:28 PM
May 14, 2008 5:15pm
Today we heard from the Cardiac team at Duke. They have concluded that Madison's left innominate vein as well as her left internal jugular vein are 100% obstructed. This means that none of her blood is taking the normal path that it should to get to her heart. Madison's body has compensated for this by generating what the call Venous Collateral Veins (I may have spelled that wrong). Those new veins are what we saw that looked like a tangled mess on her scans. Those veins are many in number.They are the new pathways her body has created to carry out the task of getting her blood back to her heart. Her pathways unfortunately aren't narrowed, they are criss crossed and turned around. This means that angioplasty or a stint will not fix this problem. The cardiac team has reached out to a surgeon to get his opinion as well has the radiologist. Although he said that they don't have a final answer or workable options yet they believe based off of what they see that there may not be anything they can do except watch it. They don't think surgery will be an option either. He sited that the obstruction is far too long and extensive and it's not at all like the typical narrowing that they see often and can fix easily. The surgeon will be the one that actually confirms this or suggests something else.
What this means long term I will update once we hear their final opinions. We will likely reach out for a second opinion as it never hurts to get someone else's perspective. We'll cross that bridge as we get to it. Please continue to pray and I will update as soon as I have more information. The member of the cardiac team assured me that someone would get back with us within a couple of days.
Allison
Journal May 6, 2008
Many people having been asking for updates on Madi so although I know that some of you that are reading this already know to a degree what is going on, others may be reading this for the first time so I am going to make an attempt to briefly recap.
On April 25, 2008 Madi went to Duke to have an Angiogram. They were specifically looking for any obstructions, kinks, or blockages in her veins that run to her heart. We've been running tests for months, okay like 9 mos to year to determine why her head hurts every day, why she was short of breath, and so fatigued . We thought that her head natuarally hurt when she was on chemo because of the drugs and just because of her illness. Side effects from Chemo typically go away after 12mos of being off treatment. Madi's never went away and she's been off treatment for over two years now. Her headaches have seemed to increase as opposed to decrease. In the last 9 mos she's had her bloodwork checked and rechecked (Checking for signs of relapse), a cranial MRI (checking for tumors), an Echo-cardiagram, a nerve conduction study (checking of nerve damage), an EMG Study(Checking for muscle damage), X-rays, CT Scans, and in December they went in and did a spinal tap to check for possible central nervous system relapse of her Leukemia. Each and every one of these tests came back with nothing that was particularly out of the ordinary except for the most recent Angiogram that revealed that she has a pretty extensive "Obstruction" in her left innominate vein that runs to her heart.
This certainly could explain her chronic headaches, fatigue as well as periodic shortness of breath. The left innominate vein is essentially still carrying blood back to her heart it's just going a very in-direct route to get there. What they found seems to be outside of their scope of "normal and typical obstructions" so since the 25th they've been trying to determine what our next approach should be. At this point they know she has an obstruction. They know that from the abnormal way her left innominate vein is running to her heart. What they don’t know is exactly how long the obstruction is and where it actually starts. They suspect that it may start in her left internal jugular vein for which they were unable to see clearly during that procedure.
After much thought and discussion her Cardiologist has ordered a MRI also known as a MRV (the V stands for Vein) of the veins in her neck. They would like to put a catheter in through her neck to essentially explore what they find. However, because what they’ve already seen is more extensive than hoped for and they suspect the obstruction may very well start in her left internal jugular vein they want to start with the least invasive approach. We feel good about taking this approach. Once they can clearly identify the extent of what were dealing with they will then be able to assess what some possible solutions are.
Madison goes tomorrow which is Wednesday afternoon the 7th for this. We do not have an appointment with her Cardiologist that day. I was informed today that we will likely not hear anything back until mid-week next week. Pray for our patience, it's hard to hurry up and wait.
Please keep all of us in your prayers, especially Madi. She's getting a little older now and understands more. She's starting to seem like she's worrying about things that we don't want her to worry about. We've told her that if we're worried then we will be honest with her but until we tell her we're worried that she shouldn't be. She smiled, gave me the biggest hug ever and said O.K. I learned a long time ago that worrying isn't all that constructive and in the end "it still is what it is" so although were saddenned that this is going on I feel confident that for whatever reason that we are merely living out God's greater plan and it will unfold, but in his time. I feel thankful that this problem has at last been revealed and I also feel thankful for the competent doctors and staff that we've come to trust at Duke. So I'm not lying when I tell Madi that I'm not worried yet!
~Allison~
Dear family and close friends,
I am writing because I need your help and I think family and friends are a great place to start. I have been named Girl of the Year by the Leukemia Lymphoma Society! I’m not sure exactly how I got picked for this but mom & dad say it’s because I was so brave when I fought this yucky disease.
Mom is running for Woman of the Year in my honor to raise money for the Leukemia Lymphoma society during an eight week program that runs until June 2, 2008. The money raised goes to support the society in finding ways to make people better when they get this disease and to help families of people that have the disease.
Please help me and my mom make a difference. My mom says that God’s grace, and research done by Leukemia Lymphoma society is why my doctors at Duke knew how to make me better. We’re happy about that!
If you would like to help, your contributions are completely tax deductible. You can donate with your credit card by visiting The Leukemia Lymphoma Society website at www.lls.org/ncemwoy, or return a check made payable to The Leukemia Lymphoma Society and mail to the address listed below before June 2, 2008. In doing so, you are helping the society in hopes they will one day find a cure for this disease. You can give in memory of a loved one that had the disease, in honor of someone important to you that is fighting the disease, or just because you are healthy and are thankful for that. Thank you for thinking about it because we really need your help and every dollar counts whether big or small!
Madison Smith
Checks can be mailed to:
Allison Smith for Woman of the Year
The Leukemia & Lymphoma Society
401 Harrison Oaks Blvd., Ste. 200
Cary, NC 27513
Your help with this is a greatly appreciated! We are in need of ten items of value or something that may be hard to get. These items will be used to auction off at the final event on June 2nd. If you can provide one of these or know someone who would be able to donate something like this please contact me. Some examples would be autographed game balls, weekend getaways to the beach or the mountains, sports game tickets, concert tickets, rounds of golf at a nice green, Spa packages from Spa’s in the greater Raleigh area, a beautiful hand-made quilt, a gas grill. These are just suggestions, any and all items will be greatly appreciated! Your generosity is amazing!
To learn more about the whole campaign or make a donation go to: www.lls.org/ncemwoy
Thank you for taking the time to check our site, please sign our guestbook.
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