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
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
1 comment:
Tom: We have an awesome Prayer Warrior Team and I would love to include you and your family in a request with your permission. You're in my thoughts and prayers! I'm not sure if Barbara remembers me, however please give her my best and let her know that she too is in my prayers.
Love,
Angela (Teves)
Post a Comment