Saturday, February 28, 2009
Day -6
Friday, February 20, 2009
February 20, 2009
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
Monday, February 16, 2009
February 16, 2009
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
Thursday, February 12, 2009
February 12, 2009
- 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.
Friday, February 6, 2009
February 6, 2009
Wednesday, February 4, 2009
February 4, 2009
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