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...
Monday, November 17, 2008
November Notes
click to enlarge
OK, so it's been a while. A lot has happened, most notably a week away from the hospital that saw Jacob at his absolute happiest...ever. He cackled at the leaves blowing, yelled when the mailman drove by, and gazed out the car window when riding around town with wider eyes than he's ever had. He was out for Halloween, when, dressed as a spider, he joined hundreds of kids at mom's school for a huge parade. He was a bit overwhelmed...going from isolation in the PICU to riding down the halls of a school that is lined with hundreds of excited, costume-clad kids was a huge step for him.
Jacob's body was able to maintain its levels (hemoglobin, albumin, white count, ANC, platelets) without transfusion for the entire time away from the hospital. We came back on November 5th to start round two of chemo, and with that now behind us we're just waiting for his levels to rebound so we can go home until mid-December. Mechanically speaking, the chemo wipes out Jacob's marrow, taking the disease with it, so when the marrow rebuilds there is less (if not zero) disease once the body rebuilds. While there is a chance Jacob could achieve remission after this round, we're trying to remain realistic (but VERY hopeful) and plan on being back in the hospital for round three, which will last through Christmas. For now though we are infinitely thankful that Jacob will have Thanksgiving with family, and we will be home to celebrate his second birthday on December 7th.
Jacob has been very happy and playful for this entire stay in the hospital. The week at home really erased a lot of his anxiety about medical staff, as he is much happier when the doctors and nurses come into the room vs. his time in the PICU. With the intensity of his treatment down there, as well as the intubation, he was not very receptive when doctors would observe him back in Septmeber and October. Now he gives out a lot more smiles, especially to the nurses he sees most often.
A very cool thing that they allow us to do is donate platelets that Jacob can use when his levels are low. We plan on regular visits to the hospital blood bank for this purpose. As adoptive parents we can't say enough how cool this is for us. Although you can technically donate every three days, dad's first visit didn't go so well. With two blown veins and quite a bit of bruising, it looks like it will take an administrative appeal to allow a repeat donation anytime soon. We will need to appeal a rule that prevents repeat donation for eight weeks after such an occurrence. The good news is that before arm #2 went bad, they got just enough platelets for Jacob to be able to use them.
They had a "music together" sort of gathering on the floor last week where kids could grab an instrument and contribute to a mellow jam. Jacob was more interested in dismantling the xylophone than playing it, but it was a start. He enjoyed watching the other kids play, and didn't like it when dad joined in on shaker. Hopefully there will be more of those gatherings. Meanwhile he's been doing his "hand dance" in bed while watching everything from Elmo to Barney and Thomas the Tank Engine. Very cute...we'll try to get it on video...
So here we are...still...living at the hospital in Hackensack. WHAT MONTH IS IT AGAIN???
Wednesday, October 22, 2008
Better and Better...
"we'll sing all the songs from way back when
And we'll walk down the avenue again
and the healing has begun"
On September 25th an evil wind blew in and out of our lives that changed our family forever. "What is happening right now is life-threatening." Those were the words of the PICU doctor, who in a moment of stress and panic was fulfilling his obligation to keep us posted on the situation. Jacob needed to transition from the standard ventilator to the oscillator in order to properly feed breaths into his lungs. It wasn't going well, and for the first time since Jacob came into our lives we were confronted with the darkest of variables.
There is something that happens to you when you have to tell your child that it's OK to go. You suspend every selfish instinct, every tendency to ask something of him... Where all the medical details require presence of mind, this moment called upon a presence of soul...you peel away the layers of knowledge, beliefs and programming and you get to the core of your selves. Conversations with God talks about how the source of all of our actions can be reduced to either Love or Fear. But it's this particular moment that requires going even deeper, and tapping into the Everything, into the source of the "why are we here". Somehow you put all emotion aside, because more than any other moment in your life, THIS moment requires you to be a good parent. You need to make sure that he knows that if he needs to take this journey, that he should do it without fear. If he sees Amelia, Elaine or Corduroy, it's OK to go to them. It's an experience that you're never proud to have shared, but one that gives you indescribable strength when you come back from it together. All of this transpires in a quick moment, one that is so overwhelming and so chaotic that you barely recognize when things start to take a turn for the better...
Amidst the madness, the shuffling of 20+ people in our small hospital room and the apparent crowd of both PICU families and staff that were gathering outside the room to observe this tornado, in flew Ron from Respiratory with the tanks of Nitric Oxide that saved our son's life. This was a crazy time...a sad time...but this wasn't Jacob's time...and so began a journey that finds us in a much better, much happier place almost a month later...
Jacob was extubated last Tuesday (i.e. they took the breathing tube out). He's awake and aware. There have been smiles and belly laughs...reacquainting himself with his old pals Monkey, Puff and Elmo. He's recovering well, as are Mom and Dad (though sleep is still quite scarce given our schedule at his bedside). He is breathing mostly on his own, with some minor support from a nasal cannula and a level of oxygen that's just above room air. His respiratory rate is around 40 breaths per minute, which is one third of what it was when he was intubated three weeks ago. They removed his chest tubes on Thursday and Friday, as well as his foley catheter (no more pee bag!). Round one of chemotherapy was successful in getting us closer to containing his disease. Jacob's spleen size was described as "normal" today, and his liver has come down in size even since they first detected its shrinkage. We have a ways to go, but the Encology folks couldn't be happier with Jacob's progress in such a short time. A bunch of things need to go right, but they say we may be able to enjoy a handful of days at home before round two of chemo, which starts on November 5th.
Last week's surgery was postponed because Jacob's platelets were too low for the procedure to safely proceed. This turned out to be a
blessing, as the surgery (currently scheduled for Thursday AM) will now be a 3-in-1 procedure. In addition to the Broviac he will now also be getting a gastrostomy tube installed. This will ensure that Jacob receives maximum nutrition during the chemotherapy, which is a huge part of the recovery process. The G tube will be temporary, but it will give his body a great chance to catch up develomentally to where he should be at 22 months. They will also remove a femoral central line that was placed in his groin while he was unconscious. That will be the last of the tubes/lines/foreign objects that need to come out to restore him back to where he was when he arrived. At one point he resembled a major city highway interchange with the amount of lines going in and coming out of him. Now he's a small hugable package of Love that we can finally hold in our arms again. Ahhhhhhhhhhh...
What a blur this has all been. With the journey far from over we find ourselves at a comfortable plateau where we feel strong and ready to continue our fight onward. Each day has been a positive step forward, and each day has depended on the last for us to determine the course ahead. We feel like we've been through a med school crash course. With Jacob reaching his respiratory goals we move on to conquer his disease, and after that get back to the good ole "Terrible Twos". We're proceeding with the same cautious level of optimism that got us here, bolstered and fueled by the overwhelming power of all your thoughts and prayers. Our appreciation is beyond words. And in the absence of words there will always be a song to help get you through it all...
"Before you go to sleep, say a little prayer...
Every day, in every way, it's getting better and better.
Beautiful beautiful beautiful...
beautiful boy..."
And we'll walk down the avenue again
and the healing has begun"
On September 25th an evil wind blew in and out of our lives that changed our family forever. "What is happening right now is life-threatening." Those were the words of the PICU doctor, who in a moment of stress and panic was fulfilling his obligation to keep us posted on the situation. Jacob needed to transition from the standard ventilator to the oscillator in order to properly feed breaths into his lungs. It wasn't going well, and for the first time since Jacob came into our lives we were confronted with the darkest of variables.
There is something that happens to you when you have to tell your child that it's OK to go. You suspend every selfish instinct, every tendency to ask something of him... Where all the medical details require presence of mind, this moment called upon a presence of soul...you peel away the layers of knowledge, beliefs and programming and you get to the core of your selves. Conversations with God talks about how the source of all of our actions can be reduced to either Love or Fear. But it's this particular moment that requires going even deeper, and tapping into the Everything, into the source of the "why are we here". Somehow you put all emotion aside, because more than any other moment in your life, THIS moment requires you to be a good parent. You need to make sure that he knows that if he needs to take this journey, that he should do it without fear. If he sees Amelia, Elaine or Corduroy, it's OK to go to them. It's an experience that you're never proud to have shared, but one that gives you indescribable strength when you come back from it together. All of this transpires in a quick moment, one that is so overwhelming and so chaotic that you barely recognize when things start to take a turn for the better...
Amidst the madness, the shuffling of 20+ people in our small hospital room and the apparent crowd of both PICU families and staff that were gathering outside the room to observe this tornado, in flew Ron from Respiratory with the tanks of Nitric Oxide that saved our son's life. This was a crazy time...a sad time...but this wasn't Jacob's time...and so began a journey that finds us in a much better, much happier place almost a month later...
Jacob was extubated last Tuesday (i.e. they took the breathing tube out). He's awake and aware. There have been smiles and belly laughs...reacquainting himself with his old pals Monkey, Puff and Elmo. He's recovering well, as are Mom and Dad (though sleep is still quite scarce given our schedule at his bedside). He is breathing mostly on his own, with some minor support from a nasal cannula and a level of oxygen that's just above room air. His respiratory rate is around 40 breaths per minute, which is one third of what it was when he was intubated three weeks ago. They removed his chest tubes on Thursday and Friday, as well as his foley catheter (no more pee bag!). Round one of chemotherapy was successful in getting us closer to containing his disease. Jacob's spleen size was described as "normal" today, and his liver has come down in size even since they first detected its shrinkage. We have a ways to go, but the Encology folks couldn't be happier with Jacob's progress in such a short time. A bunch of things need to go right, but they say we may be able to enjoy a handful of days at home before round two of chemo, which starts on November 5th.
Last week's surgery was postponed because Jacob's platelets were too low for the procedure to safely proceed. This turned out to be a
blessing, as the surgery (currently scheduled for Thursday AM) will now be a 3-in-1 procedure. In addition to the Broviac he will now also be getting a gastrostomy tube installed. This will ensure that Jacob receives maximum nutrition during the chemotherapy, which is a huge part of the recovery process. The G tube will be temporary, but it will give his body a great chance to catch up develomentally to where he should be at 22 months. They will also remove a femoral central line that was placed in his groin while he was unconscious. That will be the last of the tubes/lines/foreign objects that need to come out to restore him back to where he was when he arrived. At one point he resembled a major city highway interchange with the amount of lines going in and coming out of him. Now he's a small hugable package of Love that we can finally hold in our arms again. Ahhhhhhhhhhh...
What a blur this has all been. With the journey far from over we find ourselves at a comfortable plateau where we feel strong and ready to continue our fight onward. Each day has been a positive step forward, and each day has depended on the last for us to determine the course ahead. We feel like we've been through a med school crash course. With Jacob reaching his respiratory goals we move on to conquer his disease, and after that get back to the good ole "Terrible Twos". We're proceeding with the same cautious level of optimism that got us here, bolstered and fueled by the overwhelming power of all your thoughts and prayers. Our appreciation is beyond words. And in the absence of words there will always be a song to help get you through it all...
"Before you go to sleep, say a little prayer...
Every day, in every way, it's getting better and better.
Beautiful beautiful beautiful...
beautiful boy..."
Monday, October 13, 2008
Update from the PICU
Jacob has been more alert and aware every day since we last blogged. He's been surprisingly mellow. He's had lots of secretions (mucous) in his lungs, which the doctors say is a great sign that he is healing as he begins to breathe more on his own. When secretions build up the respiratory folks send a small tube down his larger breathing tube to suction out the mucous. The process is tough to watch, as Jacob gets so uncomfortable during suction. But when it's over he's so much more relaxed, breathing easy, and able to sleep much easier. So as much as it sucks (literally) for about 20 seconds, he gets hours of relief. This process also reduces the amount of pressure needed by the ventilator
Jacob goes into surgery in the morning. The procedure was supposed to originally happen in September, before Jacob's respiratory distress got him intubated. The procedure is very routine, and involves the installation of a device called "Broviac" in his chest. This is a small central line that allows for infusions of meds to enter his bloodstream without having to IV him every time he needs them. Because of frequent visits to clinics and hospitals, children with conditions of all kinds get Broviacs installed. When Jacob was five months old he had a smaller type of device put in called a Port o Cath, which served the exact same purpose. The difference with the Broviac is that it has two points of entry, called "lumens". The multiple lumens allow for two separate streams of meds and/or blood products (red cells, platelets) to be infused simultaneously. So if Jacob is getting an infusion of antibiotics, we don't have to pause that infusion in order to give him a transfusion or another med. This will allow for efficiency while in the hospital, and it will save us hours in the clinic when we visit as an outpatient in the future.
After the surgery is done we might be able to extubate him in the afternoon. If not we will do it on Wednesday, but at this point the ventilator is doing so little the PICU doctors want the tube out of him ASAP. Jacob is breathing 30 breaths per minute, 11 of which are supplied by the vent. The oxygen output on the vent is minimal...so basically with him doing most of the work, the surgery is the only reason he's still on the vent at all. After the breathing tube comes out, we will likely spend another day in the PICU for observation and then we go back up to the 5th floor (Pediatric Encology) for the remainder of our stay. How long will that stay be you ask? GREAT question. We will likely remain here through the next round of chemo, which is loosely scheduled for the first week of November. We say loosely because it will depend on how much his marrow is able to rebuild between now and then. If his body is strong enough to handle another round, they will proceed as scheduled. While it's lofty to think we could be home for Jacob's second birthday (December 7th), we'll just be happy to have him up and around, hospital or not. On that note, we have a bunch of physical therapy scheduled once we get back to the 5th floor. Spending weeks in bed is a developmental setback, but with his young body he'll be back on track in no time. We've been doing gentle massage to stimulate blood flow in his legs, but since we haven't been able to pick him up for weeks, he'll need some major love devoted to his back. We have every confidence the PT staff will have him up and around very soon. Right now all we care about is being able to pick him up and hug him.
Thank you all again so much for the kind words, thoughts and prayers. As much of a rollercoaster as this has been, it has been a lot easier of a ride thanks to all of you. We look forward to relaying more positive news in the weeks to come. Much Love to you all...
Jacob goes into surgery in the morning. The procedure was supposed to originally happen in September, before Jacob's respiratory distress got him intubated. The procedure is very routine, and involves the installation of a device called "Broviac" in his chest. This is a small central line that allows for infusions of meds to enter his bloodstream without having to IV him every time he needs them. Because of frequent visits to clinics and hospitals, children with conditions of all kinds get Broviacs installed. When Jacob was five months old he had a smaller type of device put in called a Port o Cath, which served the exact same purpose. The difference with the Broviac is that it has two points of entry, called "lumens". The multiple lumens allow for two separate streams of meds and/or blood products (red cells, platelets) to be infused simultaneously. So if Jacob is getting an infusion of antibiotics, we don't have to pause that infusion in order to give him a transfusion or another med. This will allow for efficiency while in the hospital, and it will save us hours in the clinic when we visit as an outpatient in the future.
After the surgery is done we might be able to extubate him in the afternoon. If not we will do it on Wednesday, but at this point the ventilator is doing so little the PICU doctors want the tube out of him ASAP. Jacob is breathing 30 breaths per minute, 11 of which are supplied by the vent. The oxygen output on the vent is minimal...so basically with him doing most of the work, the surgery is the only reason he's still on the vent at all. After the breathing tube comes out, we will likely spend another day in the PICU for observation and then we go back up to the 5th floor (Pediatric Encology) for the remainder of our stay. How long will that stay be you ask? GREAT question. We will likely remain here through the next round of chemo, which is loosely scheduled for the first week of November. We say loosely because it will depend on how much his marrow is able to rebuild between now and then. If his body is strong enough to handle another round, they will proceed as scheduled. While it's lofty to think we could be home for Jacob's second birthday (December 7th), we'll just be happy to have him up and around, hospital or not. On that note, we have a bunch of physical therapy scheduled once we get back to the 5th floor. Spending weeks in bed is a developmental setback, but with his young body he'll be back on track in no time. We've been doing gentle massage to stimulate blood flow in his legs, but since we haven't been able to pick him up for weeks, he'll need some major love devoted to his back. We have every confidence the PT staff will have him up and around very soon. Right now all we care about is being able to pick him up and hug him.
Thank you all again so much for the kind words, thoughts and prayers. As much of a rollercoaster as this has been, it has been a lot easier of a ride thanks to all of you. We look forward to relaying more positive news in the weeks to come. Much Love to you all...
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