Jacob's been doing so well!! He's even had a cough (his first that we can remember) this week and it hasn't slowed him down a bit. We still kept him home from school today to make sure it didn't escalate or challenge his breathing. One thing about living with LCH is that the normal school-kid illnesses put you on hyper-alert, and it's hard to know if a cold might lead to a fever, which might lead to who knows what. So admittedly amidst the honeymoon phase we're still stressed when confronted with some of the more common toddler issues. You learn to live with it and move on with a watchful eye.
Last we left this saga we were looking forward to good bloodwork, which thankfully we got on the 12th. So Jacob had his final shot of Vinblastine, and completed his final round of Prednisone. Tomorrow is his last day of Pepcid, and best of all we've tried the 6MP (oral chemo) with some Grenadine by mouth and he loved it. This is HUGE, as it means (for now anyways) we will have no problems with the oral meds once the G tube is out. We were so worried that he wouldn't like it. Imagine having to give your child something by mouth every day for a year and they don't like it? OUCH...glad we don't have that problem...yet, anyway ;-).
The 12th was quite a day. Along with the good bloodwork in the morning, Jacob got a visit that evening from our new friends at the Make A Wish Foundation. Jacob's lead oncologist recommended him for the program, and with the help of the social work staff at Tomorrow's Children Jacob was officially asked to make his wish. We were honestly surprised, as we originally thought that Make A Wish was specifically for kids with terminal conditions. But we learned that the program more broadly covers children with life-threatening illnesses, regardless of the current state of their prognosis/recovery. It's been very humbling getting acquainted with the organization, and we're truly blessed to have them in our lives.
They came in with a cool Thomas the Tank Engine bag with a few new trains for Jacob's collection, and we discussed the gift that we felt would be ideal for him. Obviously at his age it's a bit early to take full advantage of anything from a Disney trip to meeting a celebrity. But with physical development being a major concern right now, we felt that something geared toward helping him strengthen on a daily basis would be ideal. Little did we know when they say "dream big" they really, really mean it. So we've officially gotten word that in the early spring of 2010 Make A Wish will be installing an above-ground swimming pool for Jacob in our back yard. WOW!!!! We really still cannot believe it. What an amazing gift...it is truly humbling to say the absolute least.
Needless to say 2009 has been a turnaround year for us. Quite amazing how every day has been a step further away from those days in the PICU when Jacob was indefinitely unconscious. And it's so unfortunate that in the amazing community of people we have met throughout this experience, we are confronted with sobering stories of kids who are facing huge challenges with Histiocytosis and similar rare conditions. It's so tough to hear about some of these kids who lose their battle with the disease. It's just so cosmically wrong, and just so brutally sad. We've been lucky to encounter some amazing people along the way, and we want to acknowledge them, as we've learned so much, and because of their hard work we realize how much we can do to raise awareness of these rare diseases. Here are a few children whose stories you should absolutely check out:
Ivy Kate's Story - We stumbled across Ivy's story, and we were intrigued that her course of treatment was remarkably similar to Jacob's. We reached out to her amazing family when we were in the PICU, and they gave us some invaluable perspective and encouragement. Ivy is doing well these days after battling LCH (among many other things) since she was 3 months old (2004).
Sydney's Story - While Sydney was sadly only with us a very short time, her story is amazing and her family's efforts to spread the word about Histio conditions is truly incredible. Sydney's blog is an amazing resource of information on countless Histio cases, as well as fund-raising events and information. Many thanks to Michael Golding, Sydney's Dad, for his tireless efforts to spread the word.
Henry Goldberg - While settling in at the hospital, for what would be a several-month stay, we were greeted by one of the Tomorrow's Children social workers holding a messenger bag. On it were the words "Hope for Henry". He presented us with the bag, which we opened to find a portable DVD player for Jacob. Such a generous gift, and we were stunned to find out that Henry was a boy who lost his battle with a rare form of anemia in 2002. The Hope for Henry organization, started by Henry's family, has given out hundreds of high-end electronic items to children facing life-threatening illnesses. We were overwhelmed by their generosity in our time of need.
These stories, among the many we've read at Caring Bridge, are constant reminders that we have so much work to do in spreading the word about LCH and other rare illnesses. Once you face this disease it becomes part of your life mission to get the word out, and help in any way you can. All of the above people have taken that concept to the next level, and we look forward to doing our part so our efforts can hopefully bring some comfort to families who will unfortunately face this disease in the years to come. They say every journey begins with a small step. We're so thankful that we're fortunate enough to see the path ahead of us now. Here's to stepping cautiously...
Many thanks to you all...Much Love...
Thursday, October 22, 2009
Monday, October 12, 2009
Thanks and Praises
So we've gone dark for long enough, wouldn't you say? We would apologize, but for the first time I guess you could say we got a little selfish and decided to take advantage of the gift of the most normal months of our lives together. It's easy to get lost in the beauty and simplicity of a healthy family situation, away from the hospital and immersed in the glory of the all-American family experience.
For those of you not in regular contact with us, the good (actually fantastic) news is that Jacob's past six months have been the best of his life (and ours). Not only did the treatments succeed in subsiding Jacob's LCH, but Jacob has also (with the wonderful help of early intervention services) caught back up with his age level in terms of physical activity and speech development. As you can imagine, all that time living in the hospital was the worst possible scenario for a child who should be out experiencing the world, sharing fun times with other kids, and learning from their diverse environment. Jacob was cut off from all of the above, until the amazing work of our doctors, nurses and therapists got him back on track.
Last we reached out to all of you beautiful friends, family and supporters we met along the way, Jacob was still receiving 2CDA chemo treatments. That phase completed before the spring, when Jacob started a daily regimen of oral chemo, and bi-weekly steroid "pulses" (5 days on, 9 days off). He had surgery to switch his Broviac to an internal port, which has given him a lot more freedom and mobility, without the stress of the long external tubes and increased risk of infection.
Since the spring, his medications have included the following:
Vinblastine - Bi-weekly IV Chemo necessary for LCH treatment.
6MP (Mercaptopurine) - Daily oral chemotherapy
Methotrexate - weekly oral chemotherapy
Prednisone - bi-weekly steroids
VFEND (Voriconazole) - daily anti-fungal antibiotoics
Bactrim - 3x/wk antibiotics for possible infections from his IV port
Pepcid - to taper digestive discomfort from steroids
Looking at it on paper it's hard to believe that this regimen is part of a life we consider normal, but the short of it is that the meds are working well, and very soon we'll be able to cut this list in half. In just a few hours, we head to the clinic for (pending qualifying bloodwork) what will be Jacob's final IV chemo treatment. It's been a long road, and it seems every brutal step has been more than worth it. Upon completion of this phase, we switch from bi-weekly clinic visits to once a month for the next year. Daily 6MP will continue for that year, as well as weekly Methotrexate. However, with the completion of the IV chemo treatments we can cross off Vinblastine, Pepcid and Prednisone from the list. We will also then schedule surgery to remove both his G Tube and IV port. We haven't needed to feed Jacob through the G tube overnight in months (he's eating like a champ!). With the removal of the IV port, we can also cross off Bactrim and VFEND. With just the two oral chemos left for the next year, we're only concerned about getting the meds down easily. Jacob has been so good with getting the oral meds down, but we've always injected the oral chemos through his G Tube while he's sleeping. We're stressing a bit about getting the 6MP and Methotrexate down through his mouth. We've contacted compounding pharmacies about mixing the meds into tasty (relatively anyway) syrups, but we might even just try some different flavored syrups without exploring that option. Jacob surprised us by loving the oral Prednisone, so maybe there's hope that getting these pills down won't be an issue either. We'll make it work...
This evening we are meeting with the Make A Wish Foundation. Jacob's doctors recommended him to the program, and we look forward to exploring that opportunity. We're hoping that his gift will be something that can lend towards his further physical development. We're honored to be part of their amazing organization, and we're excited for Jacob to be part of their story.
Jacob's CT Scan from the spring was excellent, and all of his organs have been functioning normally. Because of his improvement, he was medically cleared to start school, which he did in September. He goes from 9:00 to 4:00 every weekday, and really likes it. At first he cried a lot when we dropped him off, but he adapted quickly and within a week he wasn't sad anymore when we left him.
So here we are...the journey continues but we've had the amazing fortune of hitting all of our medical goals along the way. It's odd to have something as strange as LCH in our lives, as we really don't know if we will encounter it again, whether right after treatment stops, or sometime later in life. We've been told that it's a "dumb" disease, in that it will respond to treatment even if it comes back. For now we can't be bothered with hypotheticals. Life is way too short, even when Jacob has so much of it ahead of him. For now we can only offer thanks and praises for the collective energy, strength, focus and Love that you have sent our way along this tumultuous and emotional journey.
We will keep you posted on our progress. Many, many thanks and Much Love to you all...
For those of you not in regular contact with us, the good (actually fantastic) news is that Jacob's past six months have been the best of his life (and ours). Not only did the treatments succeed in subsiding Jacob's LCH, but Jacob has also (with the wonderful help of early intervention services) caught back up with his age level in terms of physical activity and speech development. As you can imagine, all that time living in the hospital was the worst possible scenario for a child who should be out experiencing the world, sharing fun times with other kids, and learning from their diverse environment. Jacob was cut off from all of the above, until the amazing work of our doctors, nurses and therapists got him back on track.
Last we reached out to all of you beautiful friends, family and supporters we met along the way, Jacob was still receiving 2CDA chemo treatments. That phase completed before the spring, when Jacob started a daily regimen of oral chemo, and bi-weekly steroid "pulses" (5 days on, 9 days off). He had surgery to switch his Broviac to an internal port, which has given him a lot more freedom and mobility, without the stress of the long external tubes and increased risk of infection.
Since the spring, his medications have included the following:
Vinblastine - Bi-weekly IV Chemo necessary for LCH treatment.
6MP (Mercaptopurine) - Daily oral chemotherapy
Methotrexate - weekly oral chemotherapy
Prednisone - bi-weekly steroids
VFEND (Voriconazole) - daily anti-fungal antibiotoics
Bactrim - 3x/wk antibiotics for possible infections from his IV port
Pepcid - to taper digestive discomfort from steroids
Looking at it on paper it's hard to believe that this regimen is part of a life we consider normal, but the short of it is that the meds are working well, and very soon we'll be able to cut this list in half. In just a few hours, we head to the clinic for (pending qualifying bloodwork) what will be Jacob's final IV chemo treatment. It's been a long road, and it seems every brutal step has been more than worth it. Upon completion of this phase, we switch from bi-weekly clinic visits to once a month for the next year. Daily 6MP will continue for that year, as well as weekly Methotrexate. However, with the completion of the IV chemo treatments we can cross off Vinblastine, Pepcid and Prednisone from the list. We will also then schedule surgery to remove both his G Tube and IV port. We haven't needed to feed Jacob through the G tube overnight in months (he's eating like a champ!). With the removal of the IV port, we can also cross off Bactrim and VFEND. With just the two oral chemos left for the next year, we're only concerned about getting the meds down easily. Jacob has been so good with getting the oral meds down, but we've always injected the oral chemos through his G Tube while he's sleeping. We're stressing a bit about getting the 6MP and Methotrexate down through his mouth. We've contacted compounding pharmacies about mixing the meds into tasty (relatively anyway) syrups, but we might even just try some different flavored syrups without exploring that option. Jacob surprised us by loving the oral Prednisone, so maybe there's hope that getting these pills down won't be an issue either. We'll make it work...
This evening we are meeting with the Make A Wish Foundation. Jacob's doctors recommended him to the program, and we look forward to exploring that opportunity. We're hoping that his gift will be something that can lend towards his further physical development. We're honored to be part of their amazing organization, and we're excited for Jacob to be part of their story.
Jacob's CT Scan from the spring was excellent, and all of his organs have been functioning normally. Because of his improvement, he was medically cleared to start school, which he did in September. He goes from 9:00 to 4:00 every weekday, and really likes it. At first he cried a lot when we dropped him off, but he adapted quickly and within a week he wasn't sad anymore when we left him.
So here we are...the journey continues but we've had the amazing fortune of hitting all of our medical goals along the way. It's odd to have something as strange as LCH in our lives, as we really don't know if we will encounter it again, whether right after treatment stops, or sometime later in life. We've been told that it's a "dumb" disease, in that it will respond to treatment even if it comes back. For now we can't be bothered with hypotheticals. Life is way too short, even when Jacob has so much of it ahead of him. For now we can only offer thanks and praises for the collective energy, strength, focus and Love that you have sent our way along this tumultuous and emotional journey.
We will keep you posted on our progress. Many, many thanks and Much Love to you all...
Monday, February 16, 2009
Blink of an eye...
Folks:
1000 apologies for the lack of blogging since the holidays. You've all been so supportive it's the least we can do to share recent events. One thing we can absolutely and proudly share is that Jacob is as healthy as he's ever been. His response to the treatments has been fantastic, and he's been growing, laughing, eating well and completely lighting us up on a momentary basis. What a CHARACTER! His blood counts have been ideal (i.e. similar to those of a "normal" 2-year old) and he is now walking, quasi-talking (imitating us and drawing on a small but growing vocabulary) and sponging the world around him as any toddler should.
Now by no means are we out of the woods. We have a CT Scan in the morning, which will confirm that while there is presence of LCH in Jacob's system, his liver and spleen have reduced in size, and we can start tapering his treatments. This means that by the spring time if things keep going well we can switch to an oral "maintenance regimen" that will involve less intense drugs and fewer regular visits to the hospital and clinic. We have already removed the ARA-C from the chemo regimen, and we've been giving him the 2CDA on its own every 3 weeks. Where the combination of these two drugs would be followed by a period of 1-2 weeks of fevers, white count dropping to zero, need for transfusions of both platelets and red cells...the 2CDA doesn't slow him down one bit. His appetite and energy level remain normal, and his counts don't drop a bit.
We recently brought Jacob up to the PICU for a visit, as the doctors and nurses there have not seen him since his surgery in October. It is impossible to put into words how much we appreciate the work they did to make sure Jacob could bounce back from that horrific episode. It was overwhelming to see all of these faces of folks who gave their all to make sure Jacob got out of there safely. The most amazing group of people...
So we will promise to be better with blogs, photos, videos and all kinds of fun stuff in coming weeks. We may even backtrack a bit and talk about our experience living in the hospital, our holiday experiences, etc.
We Love you all. Thank you so much for doing your part to make sure Jacob got back on the road to recovery and good health. People have been throwing the word "miracle" around a lot lately. Looking back on where we've been it's hard not to agree. What a miraculous journey this has been...
1000 apologies for the lack of blogging since the holidays. You've all been so supportive it's the least we can do to share recent events. One thing we can absolutely and proudly share is that Jacob is as healthy as he's ever been. His response to the treatments has been fantastic, and he's been growing, laughing, eating well and completely lighting us up on a momentary basis. What a CHARACTER! His blood counts have been ideal (i.e. similar to those of a "normal" 2-year old) and he is now walking, quasi-talking (imitating us and drawing on a small but growing vocabulary) and sponging the world around him as any toddler should.
Now by no means are we out of the woods. We have a CT Scan in the morning, which will confirm that while there is presence of LCH in Jacob's system, his liver and spleen have reduced in size, and we can start tapering his treatments. This means that by the spring time if things keep going well we can switch to an oral "maintenance regimen" that will involve less intense drugs and fewer regular visits to the hospital and clinic. We have already removed the ARA-C from the chemo regimen, and we've been giving him the 2CDA on its own every 3 weeks. Where the combination of these two drugs would be followed by a period of 1-2 weeks of fevers, white count dropping to zero, need for transfusions of both platelets and red cells...the 2CDA doesn't slow him down one bit. His appetite and energy level remain normal, and his counts don't drop a bit.
We recently brought Jacob up to the PICU for a visit, as the doctors and nurses there have not seen him since his surgery in October. It is impossible to put into words how much we appreciate the work they did to make sure Jacob could bounce back from that horrific episode. It was overwhelming to see all of these faces of folks who gave their all to make sure Jacob got out of there safely. The most amazing group of people...
So we will promise to be better with blogs, photos, videos and all kinds of fun stuff in coming weeks. We may even backtrack a bit and talk about our experience living in the hospital, our holiday experiences, etc.
We Love you all. Thank you so much for doing your part to make sure Jacob got back on the road to recovery and good health. People have been throwing the word "miracle" around a lot lately. Looking back on where we've been it's hard not to agree. What a miraculous journey this has been...
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