Archive | September 2012

There was an old lady that swallowed a fly

Faith loved books, stories & songs. She especially liked books she got at the school library each week. Since we only had them for the week we read them as often as

possible before they needed to return. A “habit” I instilled in all the children was Daddy time before bed. Faith commanded it with “cuddle me” a request hard to resist, we would both lay in her bed until one of us (usually her first, ahem) fell asleep. After reading the story of the “Old Lady who swallowed a fly” about 50 times and her insistence on re-borrowing the book each week I needed help. According to “Blue’s Clues”, an educational authority in any Dad’s book, an auditory, visual and kinesthetic approach to learning is best. So I did what any Dad would do, I turned to youtube. We watched the video over and over on my phone until she fell asleep. It was always fun and prompted her singing and speaking more and more as her speech emerged. It was always a pleasure to hear her voice and her unique pronunciation of words. One of the funniest and typical Faith was when she learned the word ICE. Every time we were in the grocery store and she saw the big ice chest with bags of ice she would loudly come out with ASS, close phonetically, the looks were priceless.So either I’ve lost my mind or I have a purpose for referring back to the story of a lady who swallowed a fly. I think it is the perfect example of the progressive absurdity of a situation and the feelings we all had as Faith’s journey began on March 7th and the wild turns and complications that ensued.

On August 28th, we sat down with Faith’s primary pediatrician (the one who was there in delivery to bring her into this world) and Dr. Steven Kernie, the infamou

s Dr. K who is the PICU director at the Children’s Hospital of NY. The purpose of our meeting was to review the autopsy of Faith. We had waited three long months to get the answer to the question “Why did Faith die?”.

The report is very thorough, some 8 pages long, and has many more clinical details than a parent should know about their deceased child but we needed to know. The conclusion “cause of demise is cardiorespiratory failure in a setting of persistent pulmonary thromboembolic disease, pneumonia, and probable sepsis.”. More

simply stated, her heart and lungs could no longer function due to the significant number of clots throughout her lungs, complicated by pneumonia and massive systemic infection. It was all simply too much for her to handle.

The report of course does not tell us what the genesis event was that kicked off all of these clots forming. It is speculation that she may have had them those days before her first blue episode. The question has also been raised recently by Sue’s oncologist, who is also a hematologist, why pulmonary embolism wasn’t suspected right away the first time she was admitted to the emergency room before surgery.

Are we satisfied? NO! Do we think there was mismanagement of her case at many points? I think the blog reflects that many times. YES! At one point I even brought up the point with Sue that I thought that even with our strong push to get her the care and attention she required it sometime fell on unsympathetic ears. My feelings were it was because of the fact that she had Down’s Syndrome and quite frankly some people in the medical practice don’t consider “them” to be a life as worthy of preserving. I know it sounds harsh but here is reality 92% of mothers who receive a pre-natal diagnosis of Down’s Syndrome decide to abort their babies. Juries award parents “Wrongful Life” verdicts for children born with DS. There is a silent genocide of these beautiful people. I have received may stares while with Faith out it public, I understand that about as much as I understand people backing up traffic for miles to rubberneck an auto accident. I have never had anyone come up to me and tell me I was selfish for giving Faith the chance at life. I did meet many medical professionals in the hospital who just presumed that she was a very medically complicated child with lots of adaptions, special feeds, braces or adaptive equipment just to deal to daily living. None of that was true. Her pediatrician commented that she was the most healthy child with DS that their practice has ever had, they have seen heart disorders, metabolic issues and even cases of leukemia that DS is more prone to. Sue disagrees with me but a while ago when reviewing care with a very good and smart friend he stopped me and asked “Do you think she is getting a lower level of care because of Down’s Syndrome”. His wife thought he was nuts, but it is something he came about based on the facts I presented without any mention of it by me. He is one who deals in facts quite a bit as he is a lawyer.

Even though both of our wives are typically right, I still cannot dismiss those feelings.

For those of you not bold enough to ask, yes we have established a relationship with a lawyer. There will be a full medical record review. Will it change the outcome for Faith, NO. Might it help another child in a similar situation? If only one, it will be worth all the time, effort, cost and reopening of wounds.

There was a young child who swallowed a horse, she died of course.

Faith’s Mom Update

After the shock of it all I have some more news and information to report. Some of it is better, some not as good. To date Sue has had a Mammogram, Ultrasound & Biopsy of the tumor and a local lymph node.

The biopsy results are as follows:

  • Tumor type: Invasive ductal carcinoma
  • Histologic grade: Grade 3
  • Tumor Prognostic Profile: Triple Negative; Ki-67: Unfavorable; 75.37%
  • Lymph node: NEGATIVE (Negatives are not 100% until the lymph node itself is removed and pathology is completed).

Clinical staging is now: IIB, The original staging was III because of the tumor size of 6cm, since there seems to be no lymph node involvement it’s been revised to IIB.

The other biopsy facts indicate that this is a very aggressive and fast growing cancer and since it is a triple-negative (TNBC) it will only be susceptible to chemotherapy. The other modes of treating breast cancer such as hormone therapy would not be effective.

The recommended course of chemotherapy is three agents Adriamyin, Cytoxan & Taxotere (ACT) along with a bunch of meds for nausea, promotion of white cell production & steroids. A very powerful mix that is infused every three weeks for approximately 6 cycles (18 weeks).

The PET scan is on Thrusday (9/13/12) and will determine if the cancer has become metastatic (spread to other organs or tissues). Our hopes and prayers is that it has not. It will be difficult enough to fight in this one location.

The plan also remains to not perform surgery until after multiple cycles of chemotherapy. Multiple reasons exist. First they want to be able to physically see that the chemo is working on the tumor (the can measure growth and shrinkage) it will put things in a better position for eventual surgery and in TNBC it is the standard of care to have.

More good news to come after the PET scan on Thursday.

By the way I’m doing it again will be Sue’s blog to follow our battle with this breast cancer and for updates along the way. It’s going to be from a husbands & caregivers perspective. As a man we are driven to fix a problem when we see it. Once again I’m in the position where I cannot fix it but must contribute what I can to make it better and hopefully help someone else out there going through the same thing. Since I will be the source of information, as Sue may not feel like discussing this as her treatment progresses, I like this medium to communicate all the facts at once with the largest audience possible.

If it wasn’t for bad luck, I wouldn’t have no luck at all

Hello all again, my “vacation” is officially over.  I had hoped to give you all a status update on the family and what we have been up to.  I also have some more anecdotes and cute stories about Faith and some more medical information about her.

Another mater has surfaced that takes priority that I felt you should all know about and that will significantly affect our family again.

Our family learned today that my wife Susan has breast cancer.  The preliminary staging before biopsy and PET scan is stage 3. The plan is to complete some diagnostic testing in the following weeks and begin the first cycle of many of chemotherapy, to be followed by surgery in about 6 months.

We will know the prognosis better after the tests and her response to chemotherapy.  Without doubt the following months and school year will be very challenging for my wife and our family.

Thank you all for your past and future prayers for our family again as we begin another journey & battle with illness. I know our angel Faith will be keeping Mommy as safe as she can.