Grace

Many of you know that I've gone to New York twice this year to receive training in the Enneagram Psycho-Spiritual model. This has been a reality altering experience for me. I feel that the faith I've had for much of my life has come to life. I have been blessed to have this opportunity to engage in this deeply meaningful learning process about the nature of humanity and the relationship between us and God. This experience has brought my passion for my spiritual life and my passion for the human condition together by acting as a bridge between the two. I would like to write more about this process and will over time for those interested. I just have so much stirring in my soul that I have to write. Today I just want to start with a little something that came into my heart as I felt a gratitude for grace that was so much more vivid than anything I had experienced in my life:

Grace is an endowment of the true nature-an endowment that provides us with guidance, peace, truth, the experience of holy love, real freedom . . .

At the point at which I knew I was closer to understanding what I truly am I knew I was closer to experiencing grace. An emptiness precedes the openness. And openness is a way, a manner of being, a something that you can only notice has temporarily eluded you and reclaim. The grace, itself, is God’s work. My work is to meet it where it extends lightly toward me, urges me toward itself with committed longing.

My body responds, my visceral nature knowing someone . . . everyone . . . is here, always comfortably, instructively here. I acknowledge every cell in my body with my body itself-the whole-and each cell grows its own ability to arrive and connect, to receive and to reply. I am.

And as I am I feel.

I feel my measure-my measure of love, of anguish, of joy of comfort, curative sorrow and peace emanating from the single source-the source from which all experience them knowingly or unknowingly. My measure-floating effortlessly in freedom, liberated from the falsehood and subjectivity that birth confusion and resistance. And I could linger here

. . . and sometimes I do.


And as I feel I see

And I see with no words, no shapes, no colors. I see where the humanity wakens to the divine and I can see that freedom whisks the anguish along and glides it almost imperceptibly past the form, that incarnate impression.

. . . and then I know with every part of me seen and unseen.

And in that moment the bends and curves in my body dissolve and the whisp of a heart’s cry liquefies into the hunger of all and the spoken outpourings dissipate. And all that remains is a straight line from here to the fullness of reality.

With gentle forewarning I return to my numb slumber with the promise to sleep more placidly and just a moment less than last I slept. And when I wake . . . grace . . . grace will have awoken me with that sweet sound that is the muse of hymns and grace will turn me within and without toward the source and into the light.

Much Love, Barb

Day 107

When I met Tom I was fourteen years old. I remember where we were (the Santa Maria mall, right outside Sears). I remember what we were doing (working at the Salvation Army's Secret Santa booth). I don't remember what we talked about. But, I remember the feeling. There was a special mix of excitement and comfort which I think one only finds with their true soul mate.

Well, clearly, Tom is still making life exciting. But, if it can be imagined of Tom right now he's still bringing me great comfort. Since Tom left the hospital 74 days ago his God-given peacefulness has ruled his body and his mind. Of course I run after him nagging about sunscreen and the bacteria sure to be found in fast food (and he really should listen to me, don't you think?) but I'm sure his legendary peacekeeping is really on the front lines of this successful battle.

And it has been a successful battle. One week ago today Tom met his first significant milestone of 100 days post-transplant. This milestone, though somewhat arbitrarily selected by transplant doctors some years ago, has been met with great health by Tom. He has had only minor complications since his release from the hospital. These include ongoing monitoring of his kidney function which has been under control almost since it was detected, and a fever that had him fractions of a degree from being rehospitalized. Drinking large quantities of water (or receiving saline infusions when he didn't) and monitoring of his immunosuppressant medication have kept his kidneys in check.

Other significant milestones include the last (we hope) of Tom's bone marrow biopsies. He was as cool as the other side of the pillow for this one. Maybe it's because he knew it would yield such great results. This biopsy revealed how much of Tom's blood DNA was his brother's and how much was his. We were pleased to find out that it's 100% Steve's blood DNA. This is a great signal towards harmony in Tom's immune system. We were also pleased that Mom DuBransky was able to be present with us during the biopsy. This intriguing procedure capped off a month long stay with us where she kept her watchful mom eye on Tom and made sure he took impeccable care of himself during the days, accompanied us to Tom's appointments, shuttled Tom to infusions and helped us so much around the house, including many an inventive idea to make low-bacteria eating more enjoyable. She returned to Santa Maria just in time for us all to celebrate her on Mother's Day.

Beyond his 100-Day mark and all his positive test results we look forward to his remaining milestones: Year 1, which will mark the end of the transplant process (and likely all medication) and Year 2, where his risk of relapse drops dramatically. In the mean time Day 100 offered a specific opportunity that has a great deal of meaning to Tom: In-N-Out!! As of Day 100 Tom can eat whatever he wants again. I'm still feeling a bit cautious, but, of course, couldn't deny him the In-N-Out that he has been waiting for since he was put on the low-bacteria diet in February. To be honest we actually cheated and enjoyed a beautiful meal at the Prado in San Diego with only a few hours left on Day 99. Well, I thought it was beautiful. Tom claimed a palate too simple to enjoy it and eagerly awaited In-N-Out the next day. Dr. Chen and Keri even sent him a gift card for In-N-Out, acknowledging his single most persistent question at each visit: "Can I have In-N-Out yet?"

Tom's strength also continues to build. He has been cleared for the driving range and looks forward to his next full round of golf. He feels so great that every once in a while he's surprised to find that he still has some strength he has yet to regain. For this reason he has eased slowly back into work and had to learn the hard way that he can't quite perform all of the Gabriel/Daddy tricks that he is used to (you'll have to ask him how he learned-there are some mandated reporters reading this blog). Tom is, however, enjoying his new short hairstyle and intends to keep it. I didn't really think I had a preference, as he looks handsome either way, but I'm enjoying seeing more of his face and nicely shaped noggin.

Not only has City of Hope been good to Tom. Blue Shield has, as well. After Tom's life threateningly low blood count scare in December we enrolled in the PPO coverage at my work. One of our favorite things to do now is read our Claim Statements. Claim Statements are those documents that come from insurance companies that look like bills, but specifically tell you that they are not. They tell you how much the insurance paid for your treatment and how much you owe. For some time now almost all of these come with a $0.00 0n the "you owe" line. Our favorite claim with such a $0.00 balance was the one with the over $650,000 in total charges which covered much of what occurred during his hospital stay. That's some high end bone marrow. The PPO, which allowed Tom to receive treatment at City of Hope, has proven to be a wise investment and has brought us, most significantly Tom, great ease with the impact this situation has had on our livelihood.

Finally, as you might guess, our little peanut is so happy to have his Daddy home. Gabriel was excited to return home from a play date on April 9th to find Tom home. It was a long reunion of play, wildness and unabashed lawlessness (or as its known to Mommy: chaos), but over the last few weeks things have returned to normal, as marked by Gabriel's recent whine, "You two always say the same thing to me." I told Gabriel that that was the nicest thing he'd ever said to us. In the last few weeks Gabriel has also become quite eager to see Day 100 come to pass. When it did he announced that it meant, "bone marrow complete" and brought a box of Tom's medication to him asking, "Can we throw this away?" When Tom said "no, why?" he simply stated, "because it's Day 100." Again, kids really do have amazing instincts and observations.

Gabriel (and his uncle Steve) are also Tom's greatest advocates in Tom's quest to claim three birthdays, all of which we've been able to celebrate in the last three months or so. Commonly the transplant date (March 6th) is a widely noted "re-birthday" for transplant recipients. Understandable. Well, Steve has graciously offered his birthday (seeing as it is his blood fueling Tom's life) of June 7th to Tom to share. These coupled with his actual birthday of May 31st have kept us celebrating Tom regularly. Today, on Father's Day, our last official celebration of Tom until next March I wanted to write him this love letter of sorts and celebrate him with all of you.

This journey is not over, but our journey of faith will be so infinitely longer. We can see that long road clearer than ever. With that I'll leave you with Gabriel's first memorized bible verse, one that has clearly illuminated this journey for us:

"Trust in the Lord with all your heart. Do not depend on your own understanding." - Proverbs 3:5

Love, Mrs. Tom DuBransky of the Highland Park DuBranskys

Day 32

Hello Team Tom,

First, thanks for being on Team Tom. Whether you prayed, gave blood, watched Gabriel, visited Tom, kept Tom in electronic company, made food, sent packages, helped me out at work or some combination of these wonderfully supportive acts: you are on the team. And this has been a strong team. I often say: "If your partner has to go through a bone marrow transplant this is the way to do it." We're blessed and touched and excited.

Particularly we are excited because Tom's numbers finally shot through the roof yesterday. Most significantly, those elements of his white blood cells that are the most essential part of his immune system really took off:

• White Blood Count: 3.8 k/uL (low end of normal is 4.0)
• Absolute neutrophils: 1.5 k/uL (most prominent marker of his immune system function)
• Red Blood Count: 3.59 m/uL (lowe end of normal is 4.2)
• Hemoglobin: 10.6 g/dL (low end of normal is 13)
• Hematocrit: 30.2% (low end of normal is 38%)
• Platelets: 129,000 k/uL (low end of normal is 150,000)
• Basophils and eosophils (just coming onto the radar from zero today)

Steve's stem cells and Tom's body have made peace, as the boys predicted. Tom hasn't felt ill since Thursday. Nausea and vomiting are also a symptom of Graft vs. Host disease (GVHD). So, as far as we can tell Tom's GVHD is mild. He feels strong and had a great time cruising around the sixth floor of Helford Hospital yesterday. Tonight bible study will be in the lobby. Tom has had only one red blood transfusion in the last two weeks and may not need another transfusion for some time if at all.

And (drumroll please) Tom will be coming home this week. Tom's blood counts are just fractions away from meeting the "send this guy home" goals. He's eating solid food (another "check") and is infection free (a minor bacterial infection from two weeks ago has passed). In preparation to return home Tom will be weaned off of i.v. medication and back onto oral medication. He will also undergo some tests, most significantly another bone marrow biopsy (wince). But, all so worth the reward.

Tom's mom is coming to stay with us to help complete the 24-hour observation period that will ensue over the next 30 days after Tom's release. Tom will visit City of Hope several times a week during this period and likely through the remaining 100 days of the acute transplant period. Over time the number of necessary visits will decrease and Tom will begin to get back to a normal routine.

I can't tell you the overwhelming relief that has come over me in the past day. I can feel all of the emotion and tension that had built up begin to seep out of me and the tears that I withheld for fear that they may never stop come more freely and are cultivated with joy. We can expect a few more challenges, particularly with keeping Tom free of infection, but he's definitely coming to the edge of the forest and approaching a bright open field.

On Sunday when Gabriel was marking off the day on his calendar and announced that Daddy would be home in five days. I began to fear that Tom wasn't going to be home by the time Gabriel marked that final date. So, I calmly said, "You know, Daddy might not be home in five days." He paused for a second, then turned to me and asked why. I said, "Daddy has some things he has to do at the hospital and he may not be able to get them all done by Friday." He paused again and said nonchalantly, "okay," and went about his business. Small crisis averted just by having a generally happy kid.

Gabriel and I have had great days and tough days, but overall I have just treasured this experience. Tom and I are both working parents. So, in the mornings and evenings we share Gabriel-related responsibilities and similarly throughout weekends. And, though I would never recommend single parenthood, I feel fortunate to have gotten to spend so much time with Gabriel, especially these last few weeks when we tapered off of the play dates. It reminded me what I'm missing when I'm trying to do a load of laundry or run to the store without a preschooler in tow. He really does add great color to what I think of as mundane tasks that I just need to get done as quickly as possible while Tom plays with him. There are so many cliches out there about the time we lose with our kids worrying about the business of living. It takes focus, work, and, in our case, a health crisis to allow the wisdom behind those cliches to sink into my bones. I'm making a mental list of the blessings that have appeared both quietly and with a clatter throughout this process. And it's all a nice confirmation of the divine plan that is so foreign to the plans of humans.

With love and anticipation, The Highland Park DuBranskys

Day 17

Hello Dear Ones,

This is a big week for Tom. He must must must start producing white blood cells, the key sign that the transplant is working. He must also make them feel at-home in his body, so that they don't attack him. We place our confidence in the love and synergy that Tom and Steve have been professing to each other since the transplant occurred. I'm personally eagerly awaiting hearing that number go up. It had jumped up to .2 last week, briefly, but then fell back to .1 and then 0. It has been back up to .1 for several days. Waiting each day for Tom's blood count I am reminded of how distraught Tom and I were when Gabriel was born such a skinny little bird who didn't catch on to nursing right away and didn't begin to gain weight quickly. Tom and I would stay up nights just trying to get him to eat and our favorite day of the week was the day of my breastfeeding support group, where they would weigh him with an accurate scale. Tom would wait eagerly for me to call with that number and we would relish in every new ounce. Well, the tables have turned and Gabriel and I are eagerly awaiting each rise in Tom's count and we expect to have a similar experience, filled with steady climbing.

In the meantime Tom has been eating well, feeling well and looking well. Just as I expected he has a great shaped head and looks quite handsome with no hair. Tom has also gained 10 lbs since entering the hospital-much of it is suspected to be fluid retention - due to his cornucopia of i.v. fluids, from antibiotics, to nutrition to anti-rejection drugs. He likes to claim that he's getting chubby. So far, he's the only one who's willing to go that far.

He's also enjoyed a good number of visitors from family, to clients and friends from all aspects of his life. He welcomes visitors and has remarkably avoided developing infections or other illnesses-so exposure has remained gratefully under control . At this point he only asks a few minute heads up and recommends a visit after 10 AM, when he feels he can stay awake. And I'd like to ask that if you have the opportunity to take a picture of your visit (particularly if I'm not there camera-ready) that you do and forward the photo to me. Among his many visitors was our weekly bible study group. Tom and I have studied with this group for about 10 years and Tom was so happy to see them all last Tuesday. Tomorrow they plan to visit again and, this time, have the study in Tom's hospital room. This effort has seemed to me to be such an example of the interpersonal community-oriented nature of the early church. We have always felt that John and Laurie (Barnts) have lead us through a unique and enlightening study and the spiritual, emotional and practical support we have received from the group during this time is such a vivid example of its strength.

In other supportive news a steady stream of blood donation continues, to Tom's great pride. Each time someone contributes in Tom's name Tom feels like a superstar patient: contributing to his own care and sometimes to that of others. If you are able to donate, and have time, please stop by and visit Tom when you donate. Tom is keeping each "Donor Designated" card that comes with the blood and platelets and hopes to track each one back to the donor, so save the number they give you when you donate.

Gabriel and I are still working to find a nice groove, sometimes hampered by whining, frustration and pouting . . . and Gabriel gets pretty upset too. We don't have as much time to relax and enjoy each other as we'd like, but I try to make time when we can and he is enjoying his many play dates. I am really looking forward to Tom experiencing first hand the developmental strides that Gabriel has made in the recent weeks. Each day I'm more amazed that in the midst of all this that Gabriel is flourishing in the areas of reading, making up and answering addition and subtraction problems in his head, artwork and Spanish. Today I particularly noticed how he's beginning to read more fluidly and adding common inflections. As a lover of books I can't tell you how excited I am for him that he's opening the door to a whole world of imagination and fascinating information. He has read some to Tom over the web cam, but I think it will be an even more rewarding experience for Tom when he's able to hold Gabriel on his lap and enjoy a book.

Gabriel was also excited that Aunt Lisa came to stay with us this weekend. My sister came to help me with some of the bigger cleaning projects on which I haven't been able to get a handle. It was so nice to have her here and a huge relief to get the house ready for Tom's return. I also thoroughly enjoyed taking the web cam around the house to show Tom the results and hearing him say, "Wow, it's like a whole new house." I liked even more hearing him say he's going to help with the upkeep when he returns. I liked it because I like the sound of him coming home, and besides, I could use the help. ;-)

I've also appreciated all of the help those of you have offered by signing up on the Team Tom calendar. This is a key week, so I'm going to ask that if you have any time this week (particularly from approximately 8:00 - 11:00 on Wednesday or Thursday night) to please sign up on the calendar. This is the best time for me to visit Tom after getting to spend most of all of Gabriel's waking evening with him. (www.my.calendars.net/teamtom; login: teamtom; password: support).

Expecting that Tom will be producing blood like gangbusters by Friday, Gabriel and I will visit Santa Maria this weekend to celebrate Babies Kiana and Lily DuBransky's first birthdays, and the expectation of Baby Boy DuBransky #4 awaited by Jeff and Diane. It'll be a quick trip, but Gabriel has been looking forward to it for weeks.

Considering how successful all your prayers have been so far we dare ask that you continue, especially through this critical week. I, too, pray for Tom. I also am so grateful that I can't help but pray that every family and every individual struggling through these difficult times would have the kind of wonderful community that we have on which to rest their heads and their hearts. Love, The Highland Park DuBranskys

Day 8

Hello All,

Well, Tom's 8/100's done with this transplant business and is looking great! His nausea is decreasing. He's not excited about food, but he can eat. He's also being administered intravenous nutrition now. Throughout this week Tom has felt better and enjoyed visits from friends and family. Each day the doctor notes, surpisingly, how well Tom looks. The doctor also shared that Steve gave Tom an abundance of stem cells. He wasn't specific about the number and how it compares to the average donation, but it was definitely on the high end. Here they are on the big day last week:

By the end of this week the doctor's expect to see Tom's white blood count raise from the .1 that it's been since the transplant. We're eagerly looking forward to hearing that news around Friday, give or take.

Today Gabriel got to see Tom at the hospital. Last week, after declaring that he WOULD wear the mask and gloves we prepared for a visit by asking for a doctor's order for him to come up and by practicing wearing the mask and gloves at home. Gabriel lasted about 20 minutes before he'd had it with the mask, but did very well while he was there.

Today the ominous hair loss symptom took hold. Tom faced it head on (pun intended) by asking Tim to come and shave his head:

This week was also our first chance to call upon the help of the many of you who have signed up to make it possible for me to visit Tom by hanging out with Gabriel. The calendar and all you signees have been a great relief to me and I thank everyone who signed up over the last two weeks. I don't know what I would do without this support.

Thank you all for being the community holding Tom, Gabriel and me up. We really feel it. Much love, The Highland Park DuBranskys

Day 1

Hello Loved Ones,

So, Tom's a new man. He finished filling up with Steve Marrow at about 10:00 PM last night - 3 bags of it. It's pretty anti-climactic on Tom's end - as the transplant procedure is akin to a blood transfusion, of which Tom has had many. However, for Steve it's another story. Being a life-saver is painful. Steve was a champ, had a smooth harvest and is now resting through the achey recovery. Steve and Katie were able to come up and visit Tom after Steve was released. Tom was so happy to see his brother, friend and hero. The DuBransky boys love each other and there was never any question that any of the boys would do this for any of the other boys, but all the same, Tom is moved and overwhelmed with gratitude, as am I and as is Gabriel (well, being four, he mostly thinks it's really neat).

Tom's heart rate has been watched closely since the transplant began, as it has been too low (about 45 instead of his usual 70 - 75). The Laker game raised it temporarily, but not consistently. He temporarily had some chest pressure, but they gave him something to help with that, which was probably due to the thickness of the stem cells, which were placed directly into his heart for distribution throughout the body. Next steps include keeping infections at bay and managing the graft vs. host disease inherent in this process (http://en.wikipedia.org/wiki/Graft-versus-host_disease). Though, Steve and Tom deny that there will be anything other than a peaceful compromise met within Tom's bones!!

It was great to see Tom with some energy and some smiles yesterday. He had suffered with nausea and vomiting since Tuesday night and felt that all he could do to avoid it on Wednesday and Thursday was sleep. He was overwhelmed with feeling sick and exhausted. On Thursday, after almost two days of this Tom received a call from Joe Adams, who was a leader in our youth group in high school and a man of great love, affection and encouragement to us throughout our young and young adult lives. Joe prayed for Tom over the phone and Tom found this so meaningful that he laid his head in my lap and cried (for all the dudes reading this, I was not only authorized, but encouraged by Tom to tell this story). Tom is so grateful for all the prayers and appreciates the opportunity to hear the prayer himself (even if he has that comical moment of "curse that guy for making me cry"). In the end, I think this was a great relief to Tom to be able to let out his frustration and fatigue this way.

In an uncanny related event, Thursday night I was sitting on my bed getting Gabriel ready for sleep and reading to him, when, as is customary, we were about to move onto cuddle - the last step before bed time. You're going to have to trust me when I say what occurred next has never occurred before. Gabriel said, "Mommy I want to lay between your legs and cuddle" and he preceded to lay down and lay his head in my lap exactly as Tom had done earlier that day and squeezed chemo duck to his side. I've always known that Tom and Gabriel have a very special connection and a whole lot of physical and personal "alikeness," but this was such a stark picture of it to me. I didn't even realize until the next day when I was at the hospital telling Tom about Gabriel's day. Tom asked how I was doing and how Gabriel was doing and I tried to think of things that he had done that were just different to try to assess how he's doing. I realized that this need to be comforted in this special way was new and then realized: it's new for both of them.

Not only have we considered that this challenge has strengthened our faith and our understanding of the heart of God, but it has allowed all three of us to find new aspects of one another and to see, in ways that we haven't before, how tight these bonds are between us.

With love and great hope, The Highland Park DuBranskys

Day -2

Hello from Che Hope,

Tom is slowly seeking sustenance (no time is a bad time for alliteration) from a bowl of oatmeal and a banana. He just showered, so between these two morning rites of passage I think he's perking up and he looks great. Tom had just received his last drop of chemo last night when it all finally caught up with him. He developed a fever that just a bit ago broke and, at about 12: 15, got sick five times in rapid fire succession along with which came some dizziness and disorientation. Up until then he had only brief encounters with symptoms: chills, fever, stomache ache, headache and chest pain (probably bone pain from the marrow loss) were all addressed swiftly and effectively. Tom was really pleased with his relative lack of symptoms until last night. To top it off he hasn't been able to sleep the last few nights due to lots of trips to the bathroom and constant taking of his vitals. Getting sick has been a little discouraging, he really hoped/thought it wouldn't happen. But, he now has empty bones and 0.1 units/ml (usually 140.00/ml) of white blood cells.

He also receives a number of visits, in addition to his ever present nurses and Patient Care Assistants. Each day Doctor Chen visits to check on Tom and to make any adjustments to Tom's medications, tests, etc. He is also visited by his Social Worker, Recreation staff, his Physical Therapist, his Occupational Therapist, his Nutritionist, his Transplant coordinator and various Lab technicians (blood draws, chest x-rays). Tom will not leave his room until his white blood cell count goes up, so even the chest x-ray is done in his room. They are taking good care of Tom.

Tom hasn't felt he needed much. He asked for a t.v. guide-life without DVR is so challenging =o), and a couple of personal care items that are less harsh.

Yesterday Tom also received his first designated donor platelets. Tom feels really good about all his blood and platelet donations, as he hopes not to use any of the hospitals general donations and would like to leave the hospital with a surplus from his donations. Thanks, all!

Gabriel is doing well. He and I talk a lot about being a team - a team that takes care of Daddy by being cooperative with each other, talking about how much we miss him and looking forward to him coming home. He took Chemo Duck and his calendar to school yesterday for show-and-tell and talked to his classmates about his daddy's trip to the hospital for a bone marrow transplant. Each night he crosses off one of the days on his calendar. He likes doing it, even though one day the number of days still ahead were disappointing to him. Tonight we will also decorate Gabriel's March calendar page with a picture of Tom in the hospital so Gabriel can visualize how healthy and comfortable Tom looks right now. Today he starts a yoga class at Celebration Kids, which we hope will be fun and hopefully give him a few tools for coping with any stress or sadness he may feel. He's looking forward to the aspects that I told him were good preparation for gymnastics, which he will start in the Fall and to which he is so looking forward: balance, flexibility and strength. Everyone at Celebration Kids, from the teachers and directors to the parents have been so supportive of all of us. We are very blessed that he goes to preschool at a place that really is a second home for him and a support network for us.

Finally, the calendar is working very well! It's been a great comfort to check out the calendar and know that no matter what happens with Tom there'd be a way for me to be with him. Thank you, all. Because things are going relatively smoothly right now and because I took this week off of work I haven't called in any of you reserves yet, but I'm sure I will.

Thank you! Much love, The Highland Park DuBranskys

Day -5

The doctor's refer to Tom's transplant schedule as minus days leading up to the transplant (which is day 0) and then plus days up to 100 when Tom essentially emerges from the thick woods into the more open woods.

Day -6 was yesterday. The first chemo drug Cytoxan was administered last night uneventfully.

The second chemo drug ATG was administered today at 10:30 AM and has been essentially uneventful. One case of the chills drew about five staff members and was resolved very quickly. Within 15 minutes there were no more chills. This drug will be administered over 10 hours. He is continually loaded up with Benadryl to prevent reactions and has been sleeping a lot (with a few breaks for food [still a good appetite] and Lakers). Nurse Melanie says he is doing exceptionally well. She said there's usually at least a drop in blood pressure, but Tom's is perfect.

The webcam has been great. Tom chatted with Tammy in Indiana and Mom & Dave (his new lookalike since he shaved his whole face) in Santa Maria. He even "had breakfast" with Gabriel and me this morning and "kept an eye on" Gabriel while I took a shower. If you have a webcam you can see Tom in the hospital using the magic of Skype (which is free). His Skype login is tom.dubransky.

Finally, our friend, Erin, created this very cool interactive calendar for those who'd like to volunteer to help out the Highland Park DuBranskys while Tom is in the hospital over the next 1 1/2 to 2 months. Right now I've listed all the time slots that I could use the knowledge that someone could, if needed, help out with Gabriel so I can be at the hospital with Tom, taking care of things Tom (or Gabriel) may need or going to the gym. The website is: http://www.my.calendars.net/teamtom (there will always be a link to the calendar in the "Tom's Health" section in the left hand column of the blog). The instructions are in the header of the website. You will need to login "teamtom" and put in the password "support." No need to volunteer far in advance, if you know you have time in the next few days just login. It'll be nice to know I have coverage, if needed, a few days out.

Thanks-we really are blessed to have such a loving community of friends and family!!

Love, The Highland Park DuBranskys

Day -6

Hello Dear Ones,

This was a busy week of preparation for Tom's admission to Helford Hospital at City of Hope. Tom's teeth passed inspection (chemo would have exacerbated any existing problems). Tom also had his PET scan. The scan came back with only one seemingly manageable concern. The scan reveals something in Tom's lung. The "something" also grew from the date of his CT scan on February 13th to this scan on the 26th to 2 cm. The doctor suspects that it is an infection. Typically doctors would like a patient to be infection free when the transplant begins. However, because Tom's immune system is non-existent, if they took the time to clear up this infection he would be likely to develop another. They suspect that the IV antibiotics that he will be on will address the infection as he is undergoing chemotherapy and the transplant itself. They will continue monitoring the something.

Tom begins chemotherapy tonight at 8:00 PM. We thought that we were going to admit him in the later afternoon, but just got a call that we need to take him in by 12:30. The admitting doctor would like to run some tests before starting the chemo. We have no idea what that's about.

In other significant news Steve was activated as a "back up" donor to Tim. He completed his tests this Wednesday. If all goes well with his tests he will be the donor. That he is younger than Tim and also has the same blood type as Tom factors in. However, the primary factor for this choice is related to the doctor's assessment of the size of Tim and Steve. The doctor claims that the procedure will be easier on skinny Steve than buff Tim. Or, in DuBransky language, Bonds is being benched for Juan Pierre (steroid use not applicable). He also mentioned it would be easier for himself. Tim doesn't buy the "easier on Steve than Tim" defense and is very disappointed in Dr. Chen for being a wimp. =) We're so grateful to Tim for going through this process and for being more than willing to undergo this difficult procedure. Tim called Steve himself to let him know that he had been called upon as the pinch hitter.

Wimp or not Dr. Chen, Keri Halsema (Tom's nurse practitioner), Naomi Jones (his transplant coordinator) and everyone else at City of Hope have been amazing. We're looking forward to being on the other side of this challenge very soon.

Finally, this week I began to realize how well prepared we have gotten Tom for this hospital stay and how much less prepared I am. My challenge is caring for Gabriel and Tom when the two cannot be in the same place. For this reason I am asking that anyone who thinks they can volunteer time with Gabriel over the next six to seven weeks so that I can go to the hospital and/or go to the gym from time to time to let me know. Primarily this would be either weekends (location optional) or weekdays, from 6:00 to 8:30 or 8:30 - 10:15 (at our house). We have a nice big tv and good cable package if that entices you. If just a few people are willing to be "emergency" back up and would be willing to come to our house at any hour of the night if I were to get an emergency call from the hospital please let me know that as well. I don't expect that this will be needed, but it will be good to know I have someone to call if it does. If you have days that you would be willing to volunteer this time please email me at bdubransky@gmail.com with those dates and times.

Also, for thos interested in visiting Tom visits are allowable from adults and older children who are without illness, willing to wear a mask, gloves and perhaps hospital gown and not bearing any contraband (essentially flowers, plants, or other bacteria carrying items). It's also always best to visit Tom in the part of the day nearest your last shower and in freshly laundered clothes. You are welcome to contact Tom to ask if he feels well enough to have visitors (bdubransky@atomicgroup.com; 310-592-0812 or Facebook). If you don't get a response you can contact me and I'll let you know how he's doing. You can email me at the same email address as above or call my cell (310) 529-4357. Sometimes my email response rate is faster than my phone response rate.

Finally, Tom and Gabriel are spending some final moments together. Right now Tom is shaving his whole face (its been furry for at least 10 years now), with Gabriel as his witness, to prepare Gabriel for Tom's impending hair loss. There's lots of cheering and Tom-style antics going on in that bathroom right now. Next, we need to finish packing Tom up and be on our way.

Thank you, as always for making Tom a part of your daily life in your prayers and thoughts. We know you all have busy lives and challenges of your own. The space you've made for him has blessed us more than you will ever know.

With love, the Highland Park DuBranskys

February 20, 2009

Hello Friends and Family,

Today was a productive day for Team Tom Recovery. Today, Tim completed a battery of tests in preparation for the transplant. He also had blood drawn that will be available to replenish his in the event that he needs some after his bone marrow harvest. Tim's been under general anesthesia before so they feel confident that he will be in the hospital for only a few hours on the 6th.

Tom also completed his final pre-transplant test: his third bone marrow biopsy. He says that Dr. Chen was just as good as Dr. Olsen. Tom still raises the proverbial fist at Dr. Mena, who did the first one, which was also the most painful. Tom followed up his biopsy with a platelet transfusion.

Gabriel also had a big day. He met with JoAnn and Rebecca in Child Life Services. They were wonderful. First they asked him what he knew about what was happening to his daddy. Then they used a bone model to show Gabriel how marrow works and let him fill the bone with red, white and platelet "cells" (craft pom poms). They followed this by giving him "Gabe's Chemo Duck" (the "Gabe's" part was coincidental). The duck (it looks like a Suzy's Zoo Duck) has a Hickman Line (the line that will replace Tom's picc line and be used to administer Tom's chemo and other "immune system stand-in" drugs" throughout his hospital stay), a hospital gown and a bandana covering his "bald" head. They also gave Gabriel a child's doctor's kit with a doctor's badge and a few real medical supplies and proceeded to talk through various aspects of treatment, including caring for and giving medication through the Hickman line. They also encouraged Gabriel to act out many of these procedures and events. He had a great time and they really enjoyed him. I teared up several times. I think partially because we are so lucky to have such a great kid, partly because I'm so glad he's doing well with this and finally because I know there are aspects of this that cause him concern. When he was explaining what he understood he said that his Daddy's bone marrow didn't work and that Uncle Tim was going to give him some good bone marrow. Then he stopped and got a worried look on this face and asked JoAnn, "Will my uncle Tim have healthy bone marrow after he gives Daddy the healthy bone marrow?" She explained well that they would take just a little of uncle Tim's bone marrow and that he would grow more right away. And that Daddy would grow a lot from what he gets from Uncle Tim. Tom is admitted to the hospital JoAnn and Rebecca plan to have Tom decorate one side of a pillow with a handprint and a message to Gabriel. Gabriel will then be able to choose a fabric for the other side of the pillow and this will be Gabriel's to have. They will also make a special box that Gabriel can use to send things to his Daddy in the hospital and vice versa. They're also making a little photo book that will have a picture of Him, Tom, Me, Chemo Duck and we decided it would be nice if we also include a picture of Uncle Tim. It was a great visit. We look forward to seeing them again.

We also found out today that Tom's brother, Steve, is also a bone marrow match with Tom and Tim. We'll find out about Dave next week, we presume. It's quite interesting that so far all of the boys have two matches. Mom and Pop did a great job thinking ahead. ;-) We also clarified that the HLA-matching is also what would be used to assess a proper solid organ donor. Again, we hope the boys will never need this information, but there you have it.

Many of you have seen on Facebook that Tom has requested that anyone who can donate blood at City of Hope. I'll attach a copy of the note for those of you not on Facebook. Thanks, as always, for your love and prayers, The Highland Park DuBranskys


FROM TOM'S FACEBOOK NOTE:
Hey everyone!

Lots and lots of you have been graciously saying, "If there's anything I can do, just let me know."

There's one big way you can help and that is to donate blood or platelets while I'm serving my 6-week prison sentence at the City of Hope Bone Marrow Correction Facility. I'm going to be going through a lot of blood and platelets during the time that my bone marrow has been wiped out but Hero Tim's hasn't had time to start producing. So I'd like to help keep the bank in balance as best I can. But unfortunately they don't want my blood...so that's where yours comes in to play.

City of Hope is in Duarte, so only those of you capable of getting there will be able to help in this way (they do not exchange blood with other Blood Banks), and I might even get to use your actual blood or plateltes, if you match me. And I would find this exceptionally cool. Looking up and seeing that the bag is labeled "Directed Donor." That would send a tear to my eye and a flutter to my heart....and you never know; it could mean a bigger Christmas present for you! Pinch, poke! ;)

So, what would happen for those of you who are interested and have the ability to get there, you could call this number: 626-47... and set up an appointment. You would tell them that you are donating at the request of Tom DuBransky - Medical Records # 159863 and then your blood would be used just for me if it was a match, or for others if it was not.

Or, you could get on my personal list and they would call you based on my needs, though this would only work if you knew your blood type and it is O-Positive, O-Negative, A-Positive or A-Negative. Or even if you were my same blood type, and wanted to go in and give once, you could call that number. Or if you're not my blood type, you could help replenish what I use up and be helping other patients. To get on my list, either respond to this note with as many pieces of this information as possible: Name, E-Mail Address, Home Phone, Work Phone, Blood Type, or send me an e-mail with that same information at tdubransky@atomicgroup.com if you don't want to respond on Facebook. Remarkably, not that many people know their blood type.

My admission date is February 28th, just in case anybody asks.

The available appointment times are like this: Blood (which takes approximately 1 hour) - M-W 8:30 to 4:00, Thu-Sat 8:00 to 4:00 and no appointments on Sunday. For Platelets (which takes approximately 2 to 2 1/2 hours) - M-W 8:00 to 5:30, Thu-Fri 7:00 to 3:30, Sat 7:00 to 3:00 and no appointments on Sunday.

Well, that's about all I can say right now. We have been getting a ridiculous amount of support in prayer and meal preparation offers and baby-sitting and way more than that, and we really, really appreciate it and are so thankful to have so many great people in our lives.

I love you all!

Your bone-marrow-less pal/relative/schoolmate/teammate/etc.,

Tom

February 16, 2009

Hello Family and Friends,

Things are really starting to move now. Today, Tom came home from an almost 5-day stay at the hospital (not our idea of how we were going to spend this long weekend, but oh well - at least Tom fell completely off the Valentine hook). In the end his fever seemed to be credited to a staph infection, which the steady stream of IV antibiotics took care of while he was there. The good news is that while he was there they completed most of his pre-transplant testing, including a CT scan. Today Doctor Chen reported that the CT scan (completed on Friday), required before the transplant, took the place of the scheduled PET scan in ruling out lymphoma, which has officially been ruled out. We expected this, but it was great to hear. Tom is also gaining weight. The lack of physical activity, the Ensure and the good cooking at City of Hope (I know it's sad that a hospital cooks better than his wife, but he knew what he was getting into) all helped quite a bit.

In other, what we hope to be useless, information we found out that Marc, Mike and Jeff are all HLA-matches for each other. We hope to find out this week about Steve and Dave. Just interesting to know should anyone else need to swap marrow (not sure if this info is helpful for other body parts, but intend to ask) . . .

Last, but not least, the transplant has been moved up 1 week, which means Tom starts chemo in 12 days. The doctor wants to move quickly to avoid Tom developing any more infections, which we clearly appreciate. Tom is expected to be in the hospital for five weeks post transplant. We're still trying to get clear on whether he'll be there during the chemotherapy, which would mean another week.

Tom's new schedule will be:

February 28, 2009: Estimated start of Tom's "preconditioning" chemotherapy
March 6, 2009: Estimated date of "harvesting" of Tim's stem cells and the transplant to Tom
March 27, 2009: Graft expected to take place
April 10, 2009: Potential discharge from the "plastic bubble" wing of the hospital
June 14, 2009: Rough estimate for the new marrow to be fully functional and productive
March 6, 2010: Rough estimate for return to normalcy

Gabriel still seems to coping well. Now, that we have a plan I will request that Dr. Chen put in an order for Gabriel to participate in a "children of adult patients" group at City of Hope. The hardest part will be that Gabriel will see Tom little, to not at all, during the five to six weeks of hospitalization. I know families have endured worse, but just having Tom in the hospital for five days brought me down and I know that Gabriel can feel that too. He tried, valiantly, to keep me busy with his chatter and constant imaginings. In fact, at one point he told me that Mario (of Nintendo fame) was going to be in the hospital for four weeks. So, I asked if he wanted to make a calendar so that we (Baby Mario and Rosalina - also Super Mario stars) could count the days that Mario is in the hospital. He loves his calendar (which I encouraged him to make for five weeks) and is getting used to this idea. Tom is great at explaining things to Gabriel (such as his face mask, which Tom carefully introduced and Gabriel waved off with ease) and is thinking ahead to things that may be difficult for him. Tom plans to shave his whole face (which Gabriel has never seen) so that Gabriel can get used to it before he loses all his hair.

Tom's brother, Steve, is planning to get Tom a webcam for his little old laptop. This will be great for keeping Gabriel connected to Tom in as tangible a way as possible. Now, I just have to figure out how to use the webcam on my computer. Gabriel is growing and changing so much I wouldn't want Tom to miss any of it. Gabriel's reading skills are expanding so quickly now. He also loves to think up little math problems and either ask us to answer them or answer them himself. He's enjoying art as well. When I refer to his "art area" in the guest room he says to me, "You mean, the art ROOM." He likes to hang out with me in there while I srapbook and he borrows my supplies to make cards and things. I did get busted this weekend trying to throw away some of his art work . . . there were tears . . . I caved.

We hope to visit Santa Maria, briefly this weekend, for my Godson, Kale's birthday. It'll probably be our last time for at least four months (which is a long time for us).

Thank you for keeping us in your prayers. Your love is encouraging. Today's a good day, and though we acknowledge that there are some tough days ahead, our hope remains constant and unwaivering, as true hope always does. Love, The Highland Park DuBranskys

February 12, 2009

Wow, the last 37 hours has felt a week long. But it's all been worth it (but please indulge my slightly obsessive compulsive need to give the facts in chronological order). Wednesday morning we arrived at City of Hope (COH), Tom gave his blood (in preparation for his semi-weekly transfusion), had his PICC Line flushed (to prevent infection) and waited to see Doctor Chen. I appreciate that COH organizes Tom's days to reduce down time. He does too, since he's always eager to get back to work.

Dr. Chen shared that Tom's "redo" T-Cell Gene Rearrangement Test came back positive again. But, he reiterated that he believes its inconclusive in diagnosing T-Cell Lymphoma. The PET scan will be needed to complete the expected ruling out of T-Cell Lymphoma. Dr. Chen reviewed Tom's myriad medications and made some changes. He also examined Tom's mouth sores, at one point asking a colleague to come in and consult on the sores and assignment of medications. They recommended Tom no longer brush his teeth, but "sponge" them, as Tom's gums are inflamed. As this was going on Tom's brother, Steve, arrived at COH and gave his blood. He also dropped off Dave's blood. When Tom's transfusion was complete he was a bit tired and had a little, not uncommon, case of the shivers. A few hours later Tom had a fever of 103.4 F (as Tom's typical temperature is 97.6 F, this was especially concerning). COH instructed us to bring him back. They drew blood to look for an infection (nothing has been revealed yet, but they will continue monitoring) and completed a chest x-ray, which was clear. However, due to his fever, coupled with his nonexistent immune system, they admitted him.

His doctor let him know that he will need to be fever-free for 48-hour before he can be released. I was disappointed that he was not able to receive his PET scan today. Despite the fact that there is great confidence that T-Cell Lymphoma will be ruled out, I'm still looking forward to the finalization of this "out-ruling." However, because Dr. Chen was also disappointed (as it is a necessary step before he can move forward with ordering the stem cell transplant) he noted that Tom will have his PET scan the day after he is released from the hospital, which will likely be Monday. Tom's temperature dropped to an acceptable level by 6:00 AM this morning. However, rather than be discharged on Saturday he will not be released until Monday. If for no other reason than that Tom will undergo a number of the the "Pre-Admission Tests" required to precede the transplant:

• Blood Tests (Multiple organ function)
• Creatinine Clearance (Kidney function)
• Chest x-ray (Lungs & Heart abnormalities)
• EKG (Heart function)
• Echocardiogram (Heart strength)
• CT Scan (comprehensive)
• MUGA Scan (Muscular function)
• PFTs (Lung function)
• Bone Marrow Aspiration and Biopsy (Bone marrow function - not sure if he'll have to have another. This would be his third)
• Dental Examination (Infection prevention)
• MRI (Body tissue)

The reason that they are moving forward with this testing now brings us to the great news of the day: TOM'S BROTHER, TIM, IS AN HLA-MATCH FOR TOM. With 6 brothers statitistics were in Tom's favor, but there were clearly no guarantees. Results for four of Tom's brothers were in (pleasingly 7 to 8 days earlier than expected). Marc, Mike and Jeff are not a match. We are so grateful that they made the trek to COH to offer up the chance.

For those of you who don't know Tim is number five of seven DuBransky boys (Tom's #4). Tim has a lovely family, including his wife, Scotiska, his son, Julian (the first DuBransky grandchild) and his daughter, Aliyah. I've actually known Tim longer than Tom, longer than any other DuBranskys and have a ton of great memories with him, as, of course, Tom does. This would be a great memory to add to the list, "Hey Tim, remember the time you saved Tom's life? That was great."

While still basking in the great news we received a visit from one of the transplant consultants (Tom's consultant, Naomi, will stop by tomorrow). We received a lot of information, including a tentative schedule:

• March 7, 2009: Estimated start of Tom's "preconditioning" chemotherapy (yes, he will lose all his hair, including his goat)
• March 13, 2009: Estimated date of "harvesting" (nice word for the mauling of Tim and thievery of his bone marrow) of Tim's stem cells and the transplant to Tom
• April 3, 2009: Graft expected to take place (the marrow sticks)
• April 17, 2009: Potential discharge from the "plastic bubble" wing of the hospital
• June 21, 2009: Rough estimate for the new marrow to be fully functional and productive
• March 13, 2010: Rough estimate for return to normalcy

I'll spare you more dry details for now. Thank you so kindly for keeping Tom, Gabriel and me in your prayers. We continue to have our understanding, of how far your prayers have reached, stretched. Much love, The Highland Park DuBranskys

P.S. A brief episode in the chronicle of my quest to discover how Gabriel is coping with his Daddy's Health concerns:

Last night, as we waited for the hospital to complete Tom's chest x-ray and blood test, Gabriel was sitting on the edge of Tom's hospital bed completing his Valentines for his classmates. He turned to me and said, "Are we really going to visit Kale soon?" I said, "Yes, as long as we all stay healthy. If you get sick we may not go, or if I get sick, or Daddy. Gabriel turned back to look at Tom, turned back to me and said, "Well, Daddy's in here. Can't we just go without him?"

On the other hand, Gabriel has been asking to come to our bed in the middle of the night again. Many of these times we've found him plastered to Tom in the morning. Recently I was telling my friend, Dawn, that Tom will find bruises on his legs in the morning where one knee rested on the other leg throughout the night (it's a low platelet thing-the bruising easily). Dawn predicted that we would find a Gabriel-shaped bruise on Tom's back soon. Tom, typically annoyed with Gabriel in the morning, found this visual hilarious. Dawn and I agreed: Kids are intuitive and our little guy wants to be close to his Daddy right now . . . except when he's willing to ditch him to hang out with his best friend, Kale.

February 6, 2009

Tom Brief

The surgeon was not able to biopsy the growth on Tom's hand today. They were not able to control the bleeding. They will try again on Wednesday morning after his Tuesday blood transfusion if it hasn't healed.

Tim and Jeff went to City of Hope to surrender their blood yesterday and Marc and Mike went today. Steve is planning to go on Tuesday and potentially let Dave's blood hitch a ride from Santa Maria with him. We have great hope that one or more of the boys will be a match. If they are not a match the process of searching the international donor registry takes several months. Given the state of Tom's immune system that would be a significant concern to the doctor and, of course to us.

For now we're making every effort we can to keep Tom's environment sterile. In terms of silver linings: We will buy a portable dishwasher this weekend to ensure that all of Tom's eating utensils are sterilized. We've never minded much not having one, but it'll be nice to have help with the dishes. I'm also looking forward to getting Tom a big comfy recliner chair, so he can be more comfortable throughout the day.

Also, I thought I'd share the February 2009 enewsletter form the Aplastic Anemia & MDS International Foundation. I've found this foundation to have useful information. They snail mailed me a packet that has been helpful, as well. They have some interesting information about advocacy, research studies, legislation, fundraising and public awareness in this months newsletter: http://www.industrymailout.com/Industry/View.aspx?id=134638&p=534b. Particularly, I think it's kind of cute that Global Rare Disease Day is always the last day of February. Clever. I plan to keep them at the top of our list of organizations to which we donate.

In just-this-minute-news: Tom and Gabriel are fine, though they were just side swiped by another car. Luckily the car was hit behind the driver's seat where neither of them were sitting. Actually it was where I would have been sitting if I had been with them. Neither is injured at all and Gabriel was not frightened by the incident, according to Tom. The way I see it, statistically speaking, Tom's likelihood of being in another car accident (something that has worried me ever since his platelets started to drop) has just gone down.

Thanks, all, for your agape love, The HP DuBranskys

February 4, 2009

Hello All,

Just thought I'd put out a quick update from our little corner of limbo-land. City of Hope continues to be very responsive and attentive to Tom's needs. Last week Tom developed a sore on his hand. On Friday, after his attempt to utilize Neosporin to heal it failed, I sent a picture of the sore to Dr. Chen, who immediately called and directed Tom to have him paged when Tom was at City of Hope later that day for a transfusion. Nurse practitioner, Keri, suggested that a biopsy be performed on the sore. Tom expressed his displeasure at the suggestion and Dr. Chen said that a biopsy of this part of the hand may not yield the information they would need and instead chose to just observe the sore. He insisted Tom call him if another sore developed.

On Friday, Tom also shared with the doctor that his veins were not healing well after his blood draws and transfusions. Dr. Chen ordered a Peripherally Inserted Central Catheter (PICC) line, which was placed in Tom's arm yesterday. This will prevent Tom's veins from failing.

This past week has also been the week of medications. Tom's up to about 8 and is expected to medicate 5 times a day. Some are particularly to give him relief from his mouth sores and many are anti-infection drugs targeting fungi, bacteria, yeast and viruses. Today the doctor shared that Tom's neutrophil count (http://www.wisegeek.com/what-are-neutrophils.htm) is at 0 and shared that this is the key indicator in measuring the existence of immunity. Essentially, Tom has NO immune system. The drugs are now acting as his immune system. They are fighting these invaders that his body is no longer fighting. One drug has the remarkable honor of being the "most expensive item in our home." One of the antifungal medications prescribed to Tom is considered such a miracle drug that the drug company charges $2,570 for a ONE-month supply (yes, we have a prescription "receipt" with this amount on it), which is exactly what was prescribed to Tom today. Tom will be on this medication for many months, if not more than a year. Our co-pay for this item: $25. Tom will need to take great pains to ensure that he doesn't spill this medication and that it is kept at the proper temperature and lighting (rather, lack of lighting), as the insurance company will not pay to replace this item. Yikes.

The information about Tom's nonexistent immune system has also set in motion a good number of changes in Tom's regiment and freedom. Tom is now on a strict neutropenic diet (http://www.upmc.com/HealthAtoZ/patienteducation/Documents/NeutropenicDiet.pdf). He is not to eat any raw vegetables or fruits, other than the fruits that have thick inedible rinds (i.e. bananas and oranges). He cannot eat in restaurants of any kind. He needs to take special care of his skin to prevent its drying out, which would make him more vulnerable. A more counter intuitive measure, he is to avoid antibacterial products. He is expected to wear a face mask when in the hospital and in crowded places and, as you would guess, must avoid people who are ill. I am doing my best to rest and eat/drink/take copious amounts of vitamin c. It's obviously more complicated with Gabriel, due to his exposure every day to so many children with developing immune systems. I hope that we won't have to take extreme measures to separate them.

Today, upon observation of the lack of significant improvement in the sore on Tom's hand, Dr. Chen indicated that it would need to undergo biopsy. Once again Tom grumbled. Dr. Chen agreed to wait until Friday, but will wait no longer. Dr. Chen suspects that the sore is a form of fungus. However, they will also complete a pathological analysis to ensure that it isn't indicative of T-Cell Lymphoma. They took it upon themselves to request that the biopsy be completed by a plastic surgeon, because they noted that the hand is a visible area and they want to avoid leaving a scar. So, now Tom can say that he's had plastic surgery.

Tom has also experienced significant weight loss. Initially (particularly in the "liver era") this was due to lack of appetite. Now, Tom has an appetite, but the sores in his mouth were discouraging him from eating. Now that the sores are relatively under control he is eating better, but we're working to get his weight up.

Finally, notable dates include:

Gene Rearrangement Test (second opinion)
- should be complete by 02/10/09.
Appt with Dr. Chen
- 02/11/09
Testing of Tom's brothers
- The boys will go to to City of Hope next week and assessment of match should be complete two weeks later
PET Scan
- Scheduled on 02/12/09

I'm guessing a discussion around diagnosis should take place around the 17th, when both the Gene Rearrangement test and PET scan reports are complete.

Though it's becoming more complicated we're still doing our best to function as normally as possible for as long as possible. Dr. Chen feels compelled to get Tom into a stem cell (popularly termed "bone marrow") transplant ASAP. It's comforting knowing that they're watching him so closely.

Thank you, as always, for reaching out with your hearts in prayer and support.

Much love,

The Highland Park DuBranskys

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