We get more excitement out of watching our son's hourly level of urine output than basically anything else we've done in the past year. See, when he puts out more than 100 milliliters in an hour, it means he's eliminating more fluid than he's taking in. That's a good thing because between the air pressure from the oscillator and the amount of fluid going into his multiple IV sites, our boy has swollen up a bit...nothing painful, but enough to make watching the pee bag a huge family activity. At one point we had a crowd around it this weekend, with grandparents cheering him on...people fist pumping every time he notched over the 100ML mark. Some people fancy Sunday Night Football. That just isn't how the Barons roll. Give us a 6-pack of OJ from the "patient food" fridge and a decent view of the pee bag, and we'll be cheering Jacob on into the "wee" hours.
Jacob has been improving these past few days. The oxygen output and pressure from the oscillator has been reduced consistently every day. It will get to the point (possibly this week) where we can get him off the oscillator and onto a standard ventilator, with hopes of working toward waking him up. We can't get ahead of ourselves though. We still have a ways to go. But every day he shows small signs of healing, which is good news. Wednesday is definitely the start of five days of Chemo. That will knock us back a few steps. Chemo brings with it a high risk of infection, likelihood of frequent, high fevers, bloodcount rollercoasters that will call for multiple blood & platelette transfusions...not fun at all. Five days on, one month off, then five more days...until we knock this thing out. We're in it to win it at this point. We don't deal well with the "take it day by day" approach. But we're settling in and doing OK given the circumstances.
We will reply to all of your wonderful emails eventually. Thank you so much for sending healing vibes to Jacob. It's definitely been working.
Much Love...
Monday, September 29, 2008
Saturday, September 27, 2008
What You Can Do...
Folks:
Because you are are beautiful people we have heard from many of you that you're unsure of what you can do at a time like this...but you want to help. There are two very important organizations directly related to our current situation who would benefit greatly from your generosity:
Histiocytosis Association of America - Jacob's disease is one of many under-researched, under-funded disorders that are affecting hundreds of thousands of families around the globe. Through the generosity of hospitals and medical staff, some projects have gotten off the ground to create a world-wide network around these diseases to keep the community as informed as possible about any positive developments in treatment. The HAA has broadened this community beyond the families and physicians directly dealing with the diseases, to include folks like you who can make a difference with even the smallest of contributions. We encourage you to read more about Jacob's condition, and ones like it that are leaving families with far fewer resources than those who are facing more mainstream illnesses. Check out the HAA Web Site, or go directly to the DONATE PAGE.
Tomorrows Children's Fund - We cannot believe the lengths our hospital has gone to make sure the Baron family is able to focus entirely on Jacob during this difficult time. Living an hour away, it has been very difficult for us to make sure Melissa can be ready for her commute to work after doing the overnight shifts with Jacob in PICU. Also, with Reis doing day shifts in the PICU and then driving home, only to return early enough to hand the car off to Melissa, their schedule has been brutal. Tomorrows Children's Fund has arranged for the Barons to have an apartment 2 blocks from the hospital for the duration of Jacob's stay. They have also committed to covering an enormous amount of our basic living expenses, to the degree that Reis has chosen to leave his position at SCI Fidelity Records. It's the generosity of this fund that is allowing the Barons to focus entirely on Jacob, and in turn bring far less stress into the hospital room with them. This organization completely gets it...that everything they are doing and paying for results in a more comfortable state for the family, and ultimately the child. You can find out more information at the Tomorrows Children's Fund Web Site. You can also go directly to the DONATE PAGE.
This list will surely grow as we continue on this journey, but right now these are great ways for you to show your support in this difficult time.
We Love You
Because you are are beautiful people we have heard from many of you that you're unsure of what you can do at a time like this...but you want to help. There are two very important organizations directly related to our current situation who would benefit greatly from your generosity:
Histiocytosis Association of America - Jacob's disease is one of many under-researched, under-funded disorders that are affecting hundreds of thousands of families around the globe. Through the generosity of hospitals and medical staff, some projects have gotten off the ground to create a world-wide network around these diseases to keep the community as informed as possible about any positive developments in treatment. The HAA has broadened this community beyond the families and physicians directly dealing with the diseases, to include folks like you who can make a difference with even the smallest of contributions. We encourage you to read more about Jacob's condition, and ones like it that are leaving families with far fewer resources than those who are facing more mainstream illnesses. Check out the HAA Web Site, or go directly to the DONATE PAGE.
Tomorrows Children's Fund - We cannot believe the lengths our hospital has gone to make sure the Baron family is able to focus entirely on Jacob during this difficult time. Living an hour away, it has been very difficult for us to make sure Melissa can be ready for her commute to work after doing the overnight shifts with Jacob in PICU. Also, with Reis doing day shifts in the PICU and then driving home, only to return early enough to hand the car off to Melissa, their schedule has been brutal. Tomorrows Children's Fund has arranged for the Barons to have an apartment 2 blocks from the hospital for the duration of Jacob's stay. They have also committed to covering an enormous amount of our basic living expenses, to the degree that Reis has chosen to leave his position at SCI Fidelity Records. It's the generosity of this fund that is allowing the Barons to focus entirely on Jacob, and in turn bring far less stress into the hospital room with them. This organization completely gets it...that everything they are doing and paying for results in a more comfortable state for the family, and ultimately the child. You can find out more information at the Tomorrows Children's Fund Web Site. You can also go directly to the DONATE PAGE.
This list will surely grow as we continue on this journey, but right now these are great ways for you to show your support in this difficult time.
We Love You
Saturday Update...
OK...so here's what's happening (medical terms and procedures mentioned below...a warning for the squeamish).
Jacob's disease has progressed into his lungs, liver & spleen to a point where it is risky to have him breathe on his own right now. Before he was placed on the ventilator his respiratory rate was almost triple what the doctors would consider normal for someone his age and size. There is only so much time that can pass with him breathing that fast before it has a damaging effect on his lungs. We cannot risk that, so as bizarre as it sounds it is best for him to be on the ventilator right now. His lungs are getting a level of rest that we could not achieve with him breathing on his own. There are three main things that we have to address, the most harmful of which can be reversed by LCH treatment:
1> Because his liver and spleen are enlarged, his diaphragm cannot pass below a certain point, restricting his ability to take deep breaths.
2> The disease in his lungs is compromising his ability to breathe normally.
3> By Friday fluid had built up around and in his lungs, creating an extra level of pressure that contributed to his fast respiratory rate.
The doctors have drained the fluid in and around his lungs, which has reduced the pressure more significantly than we expected. He is now in a stable state, where we have to allow time for his body to heal and for his levels to come up over the next few days. It is ironic that our main goal is to get him well enough so we can make him sicker via chemotheraphy to attack the disease head on...
We need to treat the LCH with several rounds of chemotherapy. On Friday there was a summit between our Hematology/Oncology (also known as "Hemonc") team and the top three LCH specialists in North America. LCH affects around 1000 kids in the US every year, so we do not have the benefit of large studies to determine the best course of treatment for Jacob. However, there are trends in treatment results that these doctors are able to look at in order to determine the best guess. In Jacob's case we are going to administer two Chemo agents, "2-CDA" (Cladribine) and "Ara-C". We recently read about a girl in California who benefitted from these medications. We can only hope that Jacob's reaction will be the same.
We realize that the Chemo increases jacob's risk for infection, and in his unconscious state there are always chances for issues to arise. But we know that without dealing with the disease there is no way out of this. The length of the rounds of chemo treatments will be 21 days (five days on, 16 days off). We may not see results until the second or third round of these upcoming treatments, so we are in this for a potentially very long haul...
Soon we will explain more about this incredible team contributing to Jacob's improvement. You will simply not believe the level of care that we are so honored to receive here. We are amazed at the level of energy and sophistication that is channeling into Jacob.
We are overwhelmed by the amount of loving communication coming from all of you, and we so appreciate your prayers, gifts, and messages of support.
We love you all...more to come...
Jacob's disease has progressed into his lungs, liver & spleen to a point where it is risky to have him breathe on his own right now. Before he was placed on the ventilator his respiratory rate was almost triple what the doctors would consider normal for someone his age and size. There is only so much time that can pass with him breathing that fast before it has a damaging effect on his lungs. We cannot risk that, so as bizarre as it sounds it is best for him to be on the ventilator right now. His lungs are getting a level of rest that we could not achieve with him breathing on his own. There are three main things that we have to address, the most harmful of which can be reversed by LCH treatment:
1> Because his liver and spleen are enlarged, his diaphragm cannot pass below a certain point, restricting his ability to take deep breaths.
2> The disease in his lungs is compromising his ability to breathe normally.
3> By Friday fluid had built up around and in his lungs, creating an extra level of pressure that contributed to his fast respiratory rate.
The doctors have drained the fluid in and around his lungs, which has reduced the pressure more significantly than we expected. He is now in a stable state, where we have to allow time for his body to heal and for his levels to come up over the next few days. It is ironic that our main goal is to get him well enough so we can make him sicker via chemotheraphy to attack the disease head on...
We need to treat the LCH with several rounds of chemotherapy. On Friday there was a summit between our Hematology/Oncology (also known as "Hemonc") team and the top three LCH specialists in North America. LCH affects around 1000 kids in the US every year, so we do not have the benefit of large studies to determine the best course of treatment for Jacob. However, there are trends in treatment results that these doctors are able to look at in order to determine the best guess. In Jacob's case we are going to administer two Chemo agents, "2-CDA" (Cladribine) and "Ara-C". We recently read about a girl in California who benefitted from these medications. We can only hope that Jacob's reaction will be the same.
We realize that the Chemo increases jacob's risk for infection, and in his unconscious state there are always chances for issues to arise. But we know that without dealing with the disease there is no way out of this. The length of the rounds of chemo treatments will be 21 days (five days on, 16 days off). We may not see results until the second or third round of these upcoming treatments, so we are in this for a potentially very long haul...
Soon we will explain more about this incredible team contributing to Jacob's improvement. You will simply not believe the level of care that we are so honored to receive here. We are amazed at the level of energy and sophistication that is channeling into Jacob.
We are overwhelmed by the amount of loving communication coming from all of you, and we so appreciate your prayers, gifts, and messages of support.
We love you all...more to come...
Thursday, September 25, 2008
At Jacob's Bedside
We've found the need to start this blog so we could keep friends and family posted on Jacob's condition.
It's with a heavy (yet hopeful) heart that we inform everyone about Jacob. He is currently hospitalized in Pediatric ICU, as a result of complications associated with his disease, Langerhans Cell Histiocytosis, or "LCH". The disease, which started in his GI tract, has spread to his lungs, liver and spleen. Jacob's breathing is currently being performed by a type of ventilator called an oscillator. While Jacob's condition has stabilized, we have a long road ahead of us before we can get him safely breathing on his own again. We will try to cover the events that have led to this situation in the coming days.
We will be living in the PICU with him indefinitely at Hackensack University Medical Center.
We only ask that you send prayers and love our way, as we are embarking on an enormous journey to get Jacob back to good health. You can reach us via email at reis.baron@gmail.com & melissabaron@optonline.net.
It's with a heavy (yet hopeful) heart that we inform everyone about Jacob. He is currently hospitalized in Pediatric ICU, as a result of complications associated with his disease, Langerhans Cell Histiocytosis, or "LCH". The disease, which started in his GI tract, has spread to his lungs, liver and spleen. Jacob's breathing is currently being performed by a type of ventilator called an oscillator. While Jacob's condition has stabilized, we have a long road ahead of us before we can get him safely breathing on his own again. We will try to cover the events that have led to this situation in the coming days.
We will be living in the PICU with him indefinitely at Hackensack University Medical Center.
We only ask that you send prayers and love our way, as we are embarking on an enormous journey to get Jacob back to good health. You can reach us via email at reis.baron@gmail.com & melissabaron@optonline.net.
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