January 27, 2009

Hello All,

Thanks for checking in on the Highland Park DuBranskys. We take great comfort in knowing that God knows the beginning and the end of this story. At the same time the chapter by chapter experience is very emotional. Today's chapter was an encouraging one, especially in light of all the prayers that have been raised on our behalf.

The City of Hope appointment took all day, partly because it included a blood platelet transfusion. Dr. Chen considers Tom to currently be "undertransfused." So, he has scheduled Tom for transfusions twice a week. He can estimate that Tom will need these as Tom's bone marrow biopsy revealed that Tom's aplastic marrow is producing less than 5% of the amount of blood that it should be producing.

This lead to a clarification that is significant: Aplastic Anemia is a condition and is not mutually exclusive from any particular disease. In other words Tom could have both Aplastic Anemia and Lymphoma. However, in Dr. Chen's opinion this is not necessarily, or even likely, the case in Tom's situation. Dr. Chen confirmed that there are cloned t-cells in Tom's blood tests. However, he indicated that because of Tom's exceptionally low total cell count there is a great likelihood that the cloned cells are not abnormal (i.e. cancer) cells. In order to finalize a ruling out of lymphoma Tom will undergo a full body PET scan (next week) and a repeat of the T-Cell Gene Rearrangement test. The PET scan will search for masses or tumors and the Gene Rearrangement test will allow for a second-opinion analysis of the cells.

Because Tom is likely to require a bone marrow transplant whether or not he has lymphoma and because it is expected to be ruled out Dr. Chen explained the bone marrow process to us in some detail. First, Tom will need to be evaluated to determine that he is a candidate for a bone marrow transplant. All of which, as far as we know, should not be a problem. He will undergo tests of his heart, lungs, etc., as well as a psychosocial assessment, which will determine, primarily, the strength of his social network. This final assessment is required by insurance companies and now the hospital to determine whether the patient has the required system of support to recover from such a rigorous process and procedure.

While lymphoma is being ruled out and Tom is being assessed for candidacy City of Hope will also move forward with evaluating Tom's brother for a bone marrow match. I encouraged Tom to frame this to his brothers in DuBransky terms. First they'll be a competition to establish who will be in the semi finals. This competition will separate brothers who have less than a 6-HLA match from those that have the 6. Upon identifying those that have the 6 they will be reexamined to establish which one(s) have a 10-HLA match. This is the big winner(s) of their very own bone marrow extraction!!

Upon completion of his assessment Tom will undergo chemotherapy to shut down what's left of his immune system and destroy what's left of his bone marrow. The preparation for the transplant, the transplant itself and an acute observation period after the transplant will require a 1-month hospital stay. After that month, only because we live close by, he will be able to go home, as long as he has 24/7 care for an additional three weeks or so. During that time he will be observed, tested, treated for various expected complications and transfused by the hospital twice a week. 100 days after the transplant if it seems to be grafting well he will be able to come into the hospital monthly and at 1-year post-transplant will be considered no longer at risk for rejection. The doctor shared that most transplant patients are not able to work for 1 year. This was difficult for Tom to hear and in the end Tom is still convinced that the doctor doesn't understand how lacking in physical demand is his job. We'll have to take that one day by day.

The transplant process is more brief, but more invasive for the donor. The donor will donate directly from their marrow (as opposed to a new process which prepares the donors marrow to "shed" stem cells into their blood to be harvested through blood draw-a process that is not as effective in cases of Aplastic Anemia as it is in Leukemia). The donor will undergo one day of testing, one day of extraction and perhaps one day of follow-up. The doctor noted that many donors donate on a Friday, feel a bit sore through the weekend and return to work on the following Monday.

From this point forward Tom will return to City of Hope every Tuesday and Friday for transfusions and will see Dr. Chen again on February 10th. At this time Dr. Chen should be able to give us his final opinion on the ruling out of lymphoma and facilitate the completion of all tests to prepare Tom and secure a donor either from among his brothers or from the national/international bone marrow bank. The doctor indicated that Tom has a strong likelihood of undergoing a successful bone marrow transplant (over 80%).

In news imminently significant to Tom, Dr. Chen prescribed an anti-viral medication (which should help with the mouth sores that have been torturing Tom) and a medication to prevent a PCP infection. Both of these will support his health at a time when his immune system is very vulnerable.

Everyone we interacted with at City of Hope was very kind and very competent. In total his intake, lab work, consent to be included in their latest study, a transfusion and doctor's appointment were all completed. We also had a brief discussion with a representative of the Social Work department. Tom has a Social Worker assigned to him, who will complete his psychosocial assessment and support us through navigating the medical, emotional and financial aspects of this process. Finally, while making runs back and forth to the pharmacy there I ran across the resource center and found helpful information about bone marrow transplants, as well as what I feel is the biggest find: A program for children of adult patients. I'm pleased to know that we will receive support in bringing Gabriel along in this process in a way that is best for his well-being and continued development.

We can't thank you enough for your prayers. We believe very much that God is completely sovereign, but that he is also in relationship with us and that he feels deeply the honesty in our hearts. We know that there are more of you praying for us than we can now count and we believe that he hears us and wants the best for us. We don't presume to know what that is, but put all of our faith in Him to draw us closer to His perfect will.

With much love, The Highland Park DuBranskys

January 22, 2009

Dearest Family & Friends,

I want to start by letting you know that all of your thoughts and prayers are felt so deeply. It's an overwhelming amount of love that we feel. We are so blessed.

Today we received the result of Tom's T-Cell Gene Rearrangement test. Contrary to the doctor's expectation this test came back positive. They have found parent cells. Tom has some form of T-Cell Lymphoma (http://www.lymphomation.org/about-lay.htm). This diagnosis will be complete only when they can identify the type (http://www.lymphoma.org/atf/cf/%7B0363CDD6-51B5-427B-BE48-E6AF871ACEC9%7D/T-CELL%20LYMPHOMAS.PDF). It is my understanding that there are a range of types and prognoses.

The City of Hope appointment on Tuesday will now have a different focus. Dr. Olsen expects them to help complete the diagnosis and act as a second opinion. He stated that one of the key factors in specifying a T-Cell Lymphoma type is analyzing cells from a tumor. Tom has no visible or felt tumors.

Dr. Olsen also expects that they may begin with chemotheraphy. A bone marrow transplant will still possibly be a component of his treatment in the future, but will not likely take place soon.

We are now in the process of ensuring that all of his medical records are forwarded to City of Hope before the appointment.

It seems that we are back to a very early square on the game board. And that is truly frustrating. I don't know how long it will take. Some of my friends who have experience with T-Cell Lymphoma tell me that they learned that it takes time for the doctors to narrow in on the diagnosis and proper treatment because the medical field doesn't know as much as they'd like about T-Cells. I can say that I am more ready for a battle than I am for waiting and I think Tom is more ready for waiting. I think he's doing well at functioning as normally as possible and avoiding becoming discouraged.

Thank you all, again, for your love and your devotion to prayer and good thoughts.

With love, The Highland Park DuBranskys

January 19, 2009

So, as you all might have guessed we're nursing some broken hearts in the DuBransky home. The Eagles really let us down. Tom decided that we should drown our sorrows in In-N-Out (since a local teppan grill has become our celebration site and that's a bit expensive our sorrow drowning site is a bit more low-budge). We just kept running over the game in our minds and thinking of all the things that could have been different. It's a painful form of torture. When Gabriel realized that the Eagles had actually lost he really burst into tears. He's becoming a true fan: our plan has hatched.

My coping mechanism includes looking forward to the presidential inauguration. Tom's not much for the ceremonies, but he's looking forward to the new presidency.

Well, again, the update is minimal. Tom had a transfusion on Wednesday. This transfusion was given to him before his numbers got so low that he was having symptoms. He was also given an antibiotic to help with the sore in his mouth, the sore throat and the low grade fever that would come and go. For these reasons, today, 5 days later, he's not having any symptoms and looks healthy. It was great to see him with some energy. I got him some clothes that fit, which also helps him not to look so thin. He'll have a transfusion this week, hopefully on Wednesday again so that the symptoms can remain managed.

Finally, and most importantly, Tom's City of Hope appointment has been confirmed for January 27th. This 3-hour appointment is with Dr. Chen (who we think will be his doctor, Doctor Nadel is the team lead) and a clinical Social Worker. I believe it will cover the process and set the various procedures in motion. It is our understanding that we can expect them to schedule the more involved typing of Tom's blood. They will also ask Tom's brothers to be typed (starting with three of them) so that they can begin the comparison to see if any of them would be suitable donors(http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/The_Search_Process/HLA_Matching_Finding_the_Best_/index.html). Each of his brothers has a 25% chance of matching. His brothers' responses to this request have ranged from, "Please, please, take MY marrow (Marc), to "What will you give me for it" (Jeff) to "Please don't hurt me" (I'll let you guess). In reality, for those of you who don't know, Tom has six very loving brothers who are all ready to support him.

We have not received confirmation that T-Cell Lymphoma has been ruled out, but expect to hear in the next few days. The Lymphocytes (T-Cells) were much lower in his last blood test (which is a relatively good sign - if there were cancer cells they'd be multiplying not decreasing). So, we're even more confident that his diagnosis of Aplastic Anemia will be confirmed this week. Again, this diagnosis is the best case scenario, even though a rough road lies ahead. We are always reminded of the strength that grows from faith.

Thank you all again for your prayers and support. With love, The Highland Park DuBranskys

January 12, 2008

Hey All,

By way of brief update Tom is now registered with City of Hope. City of Hope is only about 15 miles east of us. We're very fortunate that there is a world leader in this area of treatment so close to us. Tomorrow we should find out when the consultation will take place. We're still on countdown: about 1 week until they confirm that T-Cell Lymphoma has been ruled out. So, since it's a short update I thought I'd share a funny Gabriel story:

I was cooking in the kitchen and listening to some "Wait, Wait, Don't Tell Me" on my IPod (10 points for you if you know that reference) while Tom was trying to watch something on t.v. Gabriel was pestering each of us, trying to get us to do something with him. Tom was getting a little frustrated and Gabriel noticed so the following exchange occurred . . .

Gabriel: Are you mad at me, Daddy?
Tom: No. I love you. You're my favorite son.
Gabriel: (confused look)
Tom: Oh, wait, how many children do I have?
Gabriel: Just one.
Tom: Should I have more?
Gabriel: YEAH, we could get Mommy to grow it for us.

I think that demonstrates why I'm so attached to my boys.

On Sunday we also got a great deal of happiness in watching the Eagles win their second playoff game this season, landing themselves in the NFC Championship game. There's a lot of buzz around them right now and predictions that they will go all the way. I love them more than ever for cheering Tom up.

Best to you all, Barbara

January 9, 2008

Tonight Tom is at the hospital receiving a red blood and platelet transfusion. His levels are dropping faster now.

He receives 20,000 platelets each time he gets transfused. He loses between 4,000 and 5,000 platelets a day. Tuesday when he went in he had less than 5,000 platelets. So, as you can tell by the math he would essentially drop to 0 in 5 to 7 days, without intervention. When Tom's platelets are low he begins to bleed in various noticeable ways. He develops petechia or purpura (bleeding uner the skin), he has an overwhelming taste of blood in his mouth as his gums bleed and his nose bleeds. The risk at levels below 10,000 is that he will bleed internally or behind his eyes, which can lead to blindness.

We're still learning about his red blood levels. He was at 5.4 on Christmas Eve when he received 2 units, bringing him up to approximately 7.4. They gave him an additional 2 units 5 1/2 days later. Today his red blood levels were at 8. A greater portion of this loss took place this week. When Tom's red blood cells are low he feels extremely weak and sleeps a lot. Its our understanding that this is due to the lack of oxygen reaching his muscles.

Yesterday Dr. Olsen asked me to share with him the hematology/oncology specialists in our health insurance network that are in the City of Hope, UCLA, USC and Cedars-Sinai medical groups. It has been quite a comfort that we enrolled in a PPO starting this January, which allows us access to these types of high-quality services. I shared the information with Dr. Olsen today. He contacted team leader, Dr. Stephen Forman at City of Hope. It appears that Tom will be assigned to Dr. Nadel. Unfortunately Tom missed a call from New Patient Services today, when he was having his temperature taken at the hospital and wasn't able to pick up the phone. We expect to connect on Monday. This will allow us to get a head start on the bone marrow transplant process while waiting for T Cell Lymphoma to be ruled out.

I hope this finds you and those you love in good health and happiness, Barbara

January 8, 2009

I spoke with Tom's doctor today. While the doctor was analyzing Tom's bone marrow biopsy there were several "clues" that arose:

1. Tom's bone marrow is not functional
2. There were a predominance of lymphocytes (AKA T-Cells) in his blood
3. The T-Cells were good in terms of their number and proportion between those that were helper cells and those that were suppressor cells

They ordered a T-Cell Gene Rearrangement test to examine whether the T-Cells appear to be cloned. We should know these results between the 13th and the 20th. The T-Cell Gene Rearrangement test will be utilized to rule out Adult T-Cell Lymphoma/Leukemia (http://www.wrongdiagnosis.com/a/adult_t_cell_leukemia_lymphoma/intro.htm). Once this is ruled out the doctor expects to make a diagnosis of Aplastic Anemia. Whether or not it is Hepatitis Associated or not the treatment will be the same. He will undergo a bone marrow transplant.

The doctor has also submitted a request to our insurance group to begin the bone marrow transplant process. This approval should be received by the 22nd, hopefully sooner. There are several factors that I am aware of that affect the success of the transplant:

1. Donor match (the key being the greatest number of blood protein matches – most likely found in siblings)
2. Time (completing it ASAP)
3. The number of blood transfusions (The lower the number the better, I’m not clear yet as to whether that means before or after the transplant or both)
   
   http://www.rush.edu/rumc/page-1124119149290.html
   http://cpmcnet.columbia.edu/dept/medicine/bonemarrow/bmtinfo.html
   
   I’ll leave it at that for now. Thank you again for your overwhelming support.
   
   With love, Barbara

January 6, 2008

Tom had a platelet transfusion today. Unfortunately his platelets dropped to their lowest ever and signficantly between Friday and Monday. His hemoglobin only dropped .4 between Friday and Monday. We don't know exactly what the significance of that drop is. We do know that platelets are more sensitive than red blood cells.

He went into the doctor's office in the morning to have his blood typed and crossed for the transfusion. At the time Dr. Olsen shared that he and Dr. Mena were now feeling that Aplastic Anemia was a more likely diagnosis and said that it might be good to let Tom's brothers know that the doctors may want to test them for a match for a bone marrow transplant.

Tom headed to the hospital for the transfusion. Just before it ended he got a call to go into his doctor's office to give an additional 7 viles of blood. During the biopsy analysis the doctor doing the analysis felt it was important to check some additional elements, particularly his T-Cell levels. We have no clue how this piece of information fits. T-cells are related most generally to the immune system and more specifically often to one's lymphnodes and are indicators in a diagnosis of lymphoma, something that hasn't come up yet. From what we undersand this additional step in the analysis of the bone marrow biopsy will delay the result/diagnosis for another 10 days. This was very upsetting to me, though Tom didn't mind as much. I think he's willing to put off the impending changes/treatment longer than I am, for reasons that are clearly understandable. We have agreed that we will call Dr. Olsen tomorrow and ask that we get an explanation of what they have found thus far in the biopsy and what clues led them to look for these new elements. I appreciate that the doctors want to get this right, but this is also intensely anxiety provoking. I'll post any additional news tomorrow when we receive it.

Thanks again for the prayers and thoughts.

January 2, 2009

Happy New Year, everyone! Thanks for checking up on Tom. Today he had his second bone marrrow biopsy. I was actually able to watch the procedure. It's much more primitive than one would expect. After giving Tom a local anesthesia the doctor uses his own force to stab Tom through the bone with a thick needle. First he "aspirates" out some blood. This is the most painful part for Tom, though it was significantly less painful this time. He then removes the needle. He reinserts the needle with a different device inside of it and then proceeds to jiggle the needle empathically in order to tear some of the bone marrow away from the bone.

Tom was not pleased to be undergoing this procedure once again and proceeded to "grade" the doctor on a curve (in comparison to the doctor who performed the first biopsy) at each step of the procedure. In the end he gave this doctor (Olsen) an A and the previous doctor (Mena) a B. As you can tell, everything is still a competition to Tom.

We should hear about the results on Tuesday. The doctor intuitively feels that Leukemia is not a likely diagnosis. Through some internet research of my own I have found that the course of Tom's illness sounds very similar to something called Hepatitis Associated Aplastic Anemia (http://content.nejm.org/cgi/content/abstract/336/15/1059). I mentioned this to the doctor today and he indicated that this does seem to fit the circumstances. I'm trying not to spend too much time getting ahead of the situation, but this really jumped out as being very similar.

This week has felt a year long to me. I have some how conjured up in my mind a "calm before the storm" mentality that has made me simultaneously sad, restless and exhausted. We have been lying low at home mostly and tried to relax. After all, there's still a chance that this will all resolve on its own and hope is always alive.

Thanks, as always, for your kind prayers and good thoughts, The Highland Park DuBranskys