Saturday, August 9th, 2008 - Friday night chemo was fairly routine except for wetting accidents in bed. Since he was doped up on Ativan concurrent with the anti-nausea meds and receiving a lot of fluids as the Doxo and Cisplatin were infused, Mattie was somewhat incoherent and had trouble both controlling and making it to the potty in time. Frankly, I would rather have to change sheets multiple times a night than have Mattie suffering any more that he is presently experiencing. Kathy the night nurse was very understanding and helpful, so it made things a little less difficult to experience.
The morning found Mattie feeling nauseous and vomitting. The Cisplatin had finished its run at 3am or so and the Doxo was still going, but the combination of the Ativan and Zofran was not working for him, and Mattie started becoming more and more alert, agitated and restless not to mention sick to his stomach. Mattie has emesis (vomitting) several times in the morning and then after his scheduled dose of Ativan, he settled down for a little nap, which gave Vicki a chance to talk with Alison, our other local "Mom-on-point" since Ann was traveling to Boston to see her family (and a Sox game). Mattie's condition persisted with emesis every 30 or 40 minutes althought the quantities were small. In the afternoon, Mattie finally settled down and shut his eyes around 4:45pm and slept for some time. Tonight, we will continue with the basic hydration routine and blood tests to ensure that Mattie's blood chemistry and electrolytes remain in balance and that his nausea and emesis goes away for good. We will then focus on him eating and drinking normally and on getting his intestinal tract moving regularly as well as monitor his weight.
Our night time routine is simply insane. Vicki starts out in the rollaway bed in a some times vain attempt to collapse, while Pete works with Mattie until he settles down and goes to sleep, which last night was around 1:30am. Pete sleeps in the chair so that we can pop up quickly to handle emesis or urination. Then, at some point in the night, we switch roles and places (without really asking each other). Between the beeps and alarms, nurse visits and medications and Mattie's discomfort, we are unable to get much sleep. Even without beeps and alarms, nurses and medications, we are eaten alive with this situation, so I guess sleep is not something to expect. Though it would be ideal for Peter and I to take turns at night sleeping in the hospital, we have found that it takes the two of us and a nurse at night to manage his vomitting and urination.
So the rest of our time in the hospital will be focused on getting Mattie stabilized. We are scheduled for an MRI of his left arm and right leg on Tuesday, so we'll have to decide if we stay in the hospital or attempt to go home briefly. Right now, the less change for Mattie the better.
As many of you know, this blog is Peter's creation and he is the sole author on all the actual postings. But I feel the need to say a few things. First, I am thoroughly impressed with Peter. He is handling this situation with such grace, strength, and dignity. I am also grateful for his technology skills (thanks Voxiva!), his ability to sift through complex information and make it understandable, and for the energy, focus, and compassion he puts into each blog entry. Second, I feel blessed to have such an incredible network of friends. In the midst of what feels like our world coming to an end, I see all of you mobilizing forces, volunteering in every way possible, and empathetizing on such a deep and genuine level. You have restored my belief that there is goodness, beauty, and love in the world. Not any easy thing to say, I must admit, when you learn your child has cancer.
I received a gift today from a wonderful mom who I have gotten to know this year at SSSAS. She came to visit and while talking with me she took off the necklace she was wearing with the word "HOPE" on it and gave it to me (Hope is her middle name). She had me look at the necklace and I noticed after the actual word was a period for punctuation. Somehow the word "HOPE" with a period after it, made a profound statement to me (because we have no other alternative, we must have hope) and will be our motto for the year. I wanted to also share a story with you that speaks to the emotional rollercoaster that Mattie is riding. I had to wake Mattie up this afternoon because we have found if he doesn't wake up every 90 minutes to use the bathroom, we have a major accident on our hands from the diuretic. So I woke him up and he was very mad at me for doing this. I finally convinced him to go to the bathroom, at which point he started punching me, kicking me, and then saying I was a terrible mom, and he hated me. Thankfully having some insights on such mental health issues, I stayed calm and talked him through his anger and his fears about the total lack of control he has over his situation. Once it was all over though and things calmed down, I landed up crying right in front of Mattie. Mattie then reached for a tissue and wiped my eyes and face for me and then gave me a big smile. It was a beautiful moment that illustrates his sensitivity and the incredible strength he has. Despite going through a harrowing 48 hours (which included a lot of vomitting today), he still found the inner strength and compassion to think about others in his life. After witnessing this, this gave me great pause. I have a feeling through this cancer journey I will learn a lot about life, love, and courage through my incredible six year old, Mattie.
I also had a visit today from a dear friend of mine who has significant training as a grief counselor. Amany and I have gone through all the ups and downs of life and graduate school together. She helped me process through some of the anger I have been feeling and truly listened to my concerns and fears, something which I have been really hoping to get from the social support staff at the hospital. It pays to have a good friend with outstanding clinical skills.
Lastly, a big thank you goes out to Ann Henshaw. Even though she is on vacation in Boston this weekend, she made it her business to call me today to check in and ask what I needed. Thank God for the Henshaws and for bringing all of our friends into our lives.
August 9, 2008
August 8, 2008
Friday, August 8th, 2008
Friday, August 8th, 2008 - Today marks the end of Mattie's first day on chemo, and what a 24 hour period it has been. Mattie slept through most of the first several hours of chemo, which was a blessing. The Doxo went in as did the Cisplatin without issue. We did have a couple of urination accidents overnight since Mattie is getting anywhere from 250 to 300 mL per hour of fluid, but in the grand scheme of things a little wet underwear or puddles on the floor is really meaningless. The Ativan made Mattie very groggy which was another good thing, so we reached the morning hours in decent shape and with Mattie still sleeping (even if Pete and Vicki were up each hour throughout the night).
During the early morning hours Mattie only received his post-hydration fluids and periodic anti-nausea as he was carted down to Radiology for CTs of his left arm, left wrist and right humerus as well as x-rays of these same area. These scans were needed for better imaging and determination of what needs to be biopsied. Since Mattie was on Ativan, we were able to get him onto a gurney along with the help of Debbie LaViolette (a Sedation Nurse and special Mattie advocate), Dr. Eric Jarandeh (Pediactric Intensivist), and Rebecca Putnam (another Sedation Nurse). Then like a marching army set off across buildings and elevators to Radiology. Once at Radiology, Mattie got his dose of Propofol, which knocked him out for both the CTs and x-rays.
Mattie did get nausea and vomitted (emesis) five times starting later in the morning through dinner time today, which was considered somewhat of a "normal" reaction (according to an ad hoc straw poll we took haphazardly today). The Cisplatin is the chemo drug that causes the worst nausea and vomitting, so we suspect it was his reaction to this, but it could also have been influenced by the morning Propofol among other things. The net effect was a little disconcerting since Mattie was both groggy, nauseous, dizzy, on a empty stomach and vomiting all the while being restless. At one point, our friend, Liz Chiaramonte and her four children (including Zander, one of Mattie's kindergarten buddies) showed up to say hi and to drop off a lovely fruit basket and some things for Mattie and Vicki, just when Mattie was at the height of this state. Needless to say it was a disturbing sight for Vicki and me, so I can only imagine what Liz and the kids thought.
Mattie did stabilize this evening and napped for a few hours, as the nurse shift change kicked in and we got Kathy (from last night) back on duty, who immediately started ramping up the next round of Mannitol, the anti-nausea meds, Ativan and Doxo. So we are now starting the second phase of this week's administration and hopefully tonight's schedule will go much like last night's schedule. Mattie has not had solid food since yesterday (vanilla pudding) so his system is stripped of food, but we are expecting more nausea and break-through vomiting tomorrow. The goal will be to minimize the loss of fluids and to stabilze Mattie so that the drugs can run out of his system.
We had several visitors today including Alison M. (mother of Paul, a Mattie buddy, and a good friend), Leslie Williams and Larry Jenney (Mattie's kindergarten teacher and assistant teacher), Liz Chiaramonte and her four children, and Ann Henshaw, Abigail her daughter and Nikki, a soccer buddy. Although Mattie was not feeling well, he still managed to enjoy his time with Abigail and Nikki as he had come out of the Ativan doped state at that point. Mattie scored many gifts today as well including a Nintendo DS gameboy, a Leap Frog Star Wars game cartidge, a Scooby Doo stuffed dog, several soft and comfy pillows, and several other gifts that we are parsing out over each day and have yet to be opened. We cannot tell you how grateful and appreciative we are to be showered with such generocity. Plus, even in his worst states, Mattie's face lights up like a firework when he sees a gift for him, just like any six year-old would.
We also met Mary Lane, a social worker, Gail Chisholm, a patient advocate, and Dr. Matthew Biel, a clinical psychiatrist. These are three more members of the team who will be supporting us. Dr. Shad and Mary arranged to get us a room for several nights in the Leavey Conference Center, which is a 100 foot walk from the Lombardi Center entrance. This was a very kind offer and Vicki and I will take advantage of it for things like short cat naps, showers or some time away for a while.
We also had a good discussion with Dr. Bob Henshaw who was at Georgetown to perform a surgery. We got a chance to see Mattie's CT scans, x-rays and MRIs as Bob took time to explain and show us the tumors as well as discuss his early thinking on possible surgical approaches/alternatives for each area. Although overwhelming, it was good to have everything laid out on the table for us to start digesting, as it allows us to start thinking and preparing ourselves for what lies ahead for our boy. Mattie will need several years of physical therapy and occupational therapy since we know for sure that all of this right humerus will be replaced with a prosthesis. The left humerus will have to be partially replaced and the distal left radius may be eligible for a bone graft or other treatments. It still is not clear on what holds for the distal right femur, but we should have some ideas soon.
Mattie is scheduled for an MRI on the three areas (left humerus, left radius and right femur) on Tuesday of next week, and Mattie will have a biopsy on Wednesday next week as well. We will likely biopsy all three areas but the MRI will guide the decision to biposy two or three areas. This should conclude the scans for now, and Mattie will not be subjected to other scans until the end of the first cycle (in about four weeks from now) when we try to get an early read on tumor growth or lack thereof. It will likely take the entire weekend for us to stabilize Mattie, and with a Tuesday morning early MRI and Wendesday biopsy, we will likely remain in the hospital until the middle of next week.
So in closing, I think we are continuing along what appears to be a very natural process of grieving including moments filled with disbelief, confusion, anger, profound sadness and acceptance. What gets us through all this are two things: hope, that chemo works for Mattie and that the surgery removes the bad tissues, prevents future occurences of the disease, and preserves as much physical function of his three appendages, and Love for Vicki's baby and my best buddy, Bear. Thank you to everyone who continue to support us in ways we are not even aware of. Ann, thanks for the laundry today and of course the Dunkin Donuts run.
During the early morning hours Mattie only received his post-hydration fluids and periodic anti-nausea as he was carted down to Radiology for CTs of his left arm, left wrist and right humerus as well as x-rays of these same area. These scans were needed for better imaging and determination of what needs to be biopsied. Since Mattie was on Ativan, we were able to get him onto a gurney along with the help of Debbie LaViolette (a Sedation Nurse and special Mattie advocate), Dr. Eric Jarandeh (Pediactric Intensivist), and Rebecca Putnam (another Sedation Nurse). Then like a marching army set off across buildings and elevators to Radiology. Once at Radiology, Mattie got his dose of Propofol, which knocked him out for both the CTs and x-rays.
Mattie did get nausea and vomitted (emesis) five times starting later in the morning through dinner time today, which was considered somewhat of a "normal" reaction (according to an ad hoc straw poll we took haphazardly today). The Cisplatin is the chemo drug that causes the worst nausea and vomitting, so we suspect it was his reaction to this, but it could also have been influenced by the morning Propofol among other things. The net effect was a little disconcerting since Mattie was both groggy, nauseous, dizzy, on a empty stomach and vomiting all the while being restless. At one point, our friend, Liz Chiaramonte and her four children (including Zander, one of Mattie's kindergarten buddies) showed up to say hi and to drop off a lovely fruit basket and some things for Mattie and Vicki, just when Mattie was at the height of this state. Needless to say it was a disturbing sight for Vicki and me, so I can only imagine what Liz and the kids thought.
Mattie did stabilize this evening and napped for a few hours, as the nurse shift change kicked in and we got Kathy (from last night) back on duty, who immediately started ramping up the next round of Mannitol, the anti-nausea meds, Ativan and Doxo. So we are now starting the second phase of this week's administration and hopefully tonight's schedule will go much like last night's schedule. Mattie has not had solid food since yesterday (vanilla pudding) so his system is stripped of food, but we are expecting more nausea and break-through vomiting tomorrow. The goal will be to minimize the loss of fluids and to stabilze Mattie so that the drugs can run out of his system.
We had several visitors today including Alison M. (mother of Paul, a Mattie buddy, and a good friend), Leslie Williams and Larry Jenney (Mattie's kindergarten teacher and assistant teacher), Liz Chiaramonte and her four children, and Ann Henshaw, Abigail her daughter and Nikki, a soccer buddy. Although Mattie was not feeling well, he still managed to enjoy his time with Abigail and Nikki as he had come out of the Ativan doped state at that point. Mattie scored many gifts today as well including a Nintendo DS gameboy, a Leap Frog Star Wars game cartidge, a Scooby Doo stuffed dog, several soft and comfy pillows, and several other gifts that we are parsing out over each day and have yet to be opened. We cannot tell you how grateful and appreciative we are to be showered with such generocity. Plus, even in his worst states, Mattie's face lights up like a firework when he sees a gift for him, just like any six year-old would.
We also met Mary Lane, a social worker, Gail Chisholm, a patient advocate, and Dr. Matthew Biel, a clinical psychiatrist. These are three more members of the team who will be supporting us. Dr. Shad and Mary arranged to get us a room for several nights in the Leavey Conference Center, which is a 100 foot walk from the Lombardi Center entrance. This was a very kind offer and Vicki and I will take advantage of it for things like short cat naps, showers or some time away for a while.
We also had a good discussion with Dr. Bob Henshaw who was at Georgetown to perform a surgery. We got a chance to see Mattie's CT scans, x-rays and MRIs as Bob took time to explain and show us the tumors as well as discuss his early thinking on possible surgical approaches/alternatives for each area. Although overwhelming, it was good to have everything laid out on the table for us to start digesting, as it allows us to start thinking and preparing ourselves for what lies ahead for our boy. Mattie will need several years of physical therapy and occupational therapy since we know for sure that all of this right humerus will be replaced with a prosthesis. The left humerus will have to be partially replaced and the distal left radius may be eligible for a bone graft or other treatments. It still is not clear on what holds for the distal right femur, but we should have some ideas soon.
Mattie is scheduled for an MRI on the three areas (left humerus, left radius and right femur) on Tuesday of next week, and Mattie will have a biopsy on Wednesday next week as well. We will likely biopsy all three areas but the MRI will guide the decision to biposy two or three areas. This should conclude the scans for now, and Mattie will not be subjected to other scans until the end of the first cycle (in about four weeks from now) when we try to get an early read on tumor growth or lack thereof. It will likely take the entire weekend for us to stabilize Mattie, and with a Tuesday morning early MRI and Wendesday biopsy, we will likely remain in the hospital until the middle of next week.
So in closing, I think we are continuing along what appears to be a very natural process of grieving including moments filled with disbelief, confusion, anger, profound sadness and acceptance. What gets us through all this are two things: hope, that chemo works for Mattie and that the surgery removes the bad tissues, prevents future occurences of the disease, and preserves as much physical function of his three appendages, and Love for Vicki's baby and my best buddy, Bear. Thank you to everyone who continue to support us in ways we are not even aware of. Ann, thanks for the laundry today and of course the Dunkin Donuts run.
August 7, 2008
Thursday, August 7th, 2008
Thursday, August 7th, 2008 - At 8:30pm ET tonight, Mattie began his first chemotherapy.
The first week of this five week cycle is as follows:
We had another unfortunate incident today regarding a short-notice scheduled CT Scan that could not be performed because Mattie got himself hysterical. Given the timing of when we found out about the CT Scan, we could not put Mattie under (using Propofol), so our only choice was Versed. This did not work as Mattie is now very traumatized by any procedure. He constantly asks about what is going on, why someone is doing something, what is happening next, and he is struggling for control of even the smallest aspects of his life given that so much now is completely out of his control. It's absolutely horrible to watch this, so when this happened again today, both Pete and Vicki issued a direct mandate to all that there will be no more procedures for now without sedation, and that all future scan schedules must be well planned and consolidated. I believe the message has been received and understood, and although not ideal, I will not have this poor kid traumatized one more time. No way.
On a lighter note, we were blessed again today with several visitors and of course dozens of wonderful messages and comments on the blog all offering support, love, well wishes, prayers and pledges of help for Mattie and us. Brian and Catherine Canterbury paid Mattie a short visit between competing doctor and nurse visits to deliver well wishes and several things to keep Mattie's hands and mind busy. Catherine and Mattie share something in common, and Catherine was helpful in describing to Mattie some of the things that are coming. Also, Joan Holden and Bob Weiman (St. Stephens/St. Agnes Head of School and Head of Lower School respectively) also came to say hi to Mattie and performed some magic tricks and gave Mattie a Saints hat, a Saints hound and of course some of his own magic tricks. Also, Lorraine Kleinwaks came to visit today as well. As one of our fiercest and dearest, non-blood related family members, Lorraine's presence always helps us in many ways.
We were also lucky today to have Tricia as his nurse today for the 7am-7pm shift, a seasoned and well practiced individual who blended firmness with sensitivity in everything that she did. Tricia spent the time with Mattie, and with Pete and Vicki walking through some of the maintenance procedures for Mattie's central line and the timeline for the chemo starting tonight. This helped us to start processing what to expect from the the myriad of drugs, fluids, steps, equipment, sequencing and timing that will now dominate our lives for the next year. We have to continue to thank the Child Life Specialists, particularly Linda Kim, who is really an angel and savior wrapped up in one.
The prayer circles are extending as we speak, family members are putting their lives on hold for us and friends are circling around us working hard to figure out the best ways to support us. Vicki and I are the kind of people who are used to helping others, so among everything else going on, we are having to reach a series of realizations and make a transition: admitting we need help, and shifting from those who help others, to those that need the help of others. We are not sure in many cases how to act or react so thank you for being patient, supportive and understanding.
So tonight we are underway on the next phase of this unenviable journey. Mattie is on the bed now watching a Scooby DVD, the hospital room is looking a little less sterile thanks to Mattie's artistic touches and decorating activities (i.e. glow in the dark bugs on the wall, stuffed animals on every gas valve and resuscitation vessel, masks and volcanoes made from model magic, magic swimming fish, baseball hats and a variety of art projects). Mattie is still his same old self, full of life and spirit, wonderfully inquisitive and remarkably insightful. Mattie had to upgrade tonight to a pole that had three IV pumps on it (not just the one that he has been tethered to the last four days), and his biggest concern was what name to give it. He then decided to take it out for a walk around the floor and halls to show off his "upgrade" to everyone (and also in part I think to prove to himself that he could handle maneuvering it around the halls). Needless to say it was a successful journey. Here's hoping this is an indication of what's to come.
The first week of this five week cycle is as follows:
- First, are infusions of both Zofran and Dexamethasone, which are both anti-nausea medications to counteract the chemo. The Dexamethasone will be given every eight hours from here through the next week.
- Second, both the first dose of Doxorubicin ("Doxo", a chemo drug) and Mannitol (a diuretic to improve fluid flow that will help flush the chemo drugs from his body) will be infused. The Doxo will run for 24 hours after which a second 24-hour infusion will run (see below). The Mannitol will be given by itself for four hours in parallel with the Doxo.
- Third, the Cisplatin (another chemo drug) will then be given for four hours in combination with another four hour administration of Mannitol (again to help flush the fluids out of Mattie's body). The Cisplatin is the drug that typically causes nausea and vomiting (emesis), so tonight, Mattie will also be given some Ativan (similar to Valium) that in low dosages tends to both resolve the nausea/vomiting and puts a person to sleep.
- Fourth, following the four hour Cisplatin infusion, Mattie will then go on post-Cisplatin hydration until the next round begins.
- Fifth, the second 24-hour infusion of Doxo will run again in parallel with Mannitol (the diuretic to help flush the chemo).
- Sixth, the second batch of Cisplatin will be administered in combination with Mannitol that will run for four hours.
- Seventh, the post-Cisplatin hydration will continue during which Mattie may receive several drugs to help his blood chemistry and organ functions to return to relatively normal levels.
- Mattie will have blood drawn each day to check on a variety of enzymes and mineral levels in his bloodstream. The impacts of these specific chemo drugs are well know and predictable, so between blood tests, void rates, specific density of the urine and of course his vital signs, Mattie's health will be closely monitored.
We had another unfortunate incident today regarding a short-notice scheduled CT Scan that could not be performed because Mattie got himself hysterical. Given the timing of when we found out about the CT Scan, we could not put Mattie under (using Propofol), so our only choice was Versed. This did not work as Mattie is now very traumatized by any procedure. He constantly asks about what is going on, why someone is doing something, what is happening next, and he is struggling for control of even the smallest aspects of his life given that so much now is completely out of his control. It's absolutely horrible to watch this, so when this happened again today, both Pete and Vicki issued a direct mandate to all that there will be no more procedures for now without sedation, and that all future scan schedules must be well planned and consolidated. I believe the message has been received and understood, and although not ideal, I will not have this poor kid traumatized one more time. No way.
On a lighter note, we were blessed again today with several visitors and of course dozens of wonderful messages and comments on the blog all offering support, love, well wishes, prayers and pledges of help for Mattie and us. Brian and Catherine Canterbury paid Mattie a short visit between competing doctor and nurse visits to deliver well wishes and several things to keep Mattie's hands and mind busy. Catherine and Mattie share something in common, and Catherine was helpful in describing to Mattie some of the things that are coming. Also, Joan Holden and Bob Weiman (St. Stephens/St. Agnes Head of School and Head of Lower School respectively) also came to say hi to Mattie and performed some magic tricks and gave Mattie a Saints hat, a Saints hound and of course some of his own magic tricks. Also, Lorraine Kleinwaks came to visit today as well. As one of our fiercest and dearest, non-blood related family members, Lorraine's presence always helps us in many ways.
We were also lucky today to have Tricia as his nurse today for the 7am-7pm shift, a seasoned and well practiced individual who blended firmness with sensitivity in everything that she did. Tricia spent the time with Mattie, and with Pete and Vicki walking through some of the maintenance procedures for Mattie's central line and the timeline for the chemo starting tonight. This helped us to start processing what to expect from the the myriad of drugs, fluids, steps, equipment, sequencing and timing that will now dominate our lives for the next year. We have to continue to thank the Child Life Specialists, particularly Linda Kim, who is really an angel and savior wrapped up in one.
The prayer circles are extending as we speak, family members are putting their lives on hold for us and friends are circling around us working hard to figure out the best ways to support us. Vicki and I are the kind of people who are used to helping others, so among everything else going on, we are having to reach a series of realizations and make a transition: admitting we need help, and shifting from those who help others, to those that need the help of others. We are not sure in many cases how to act or react so thank you for being patient, supportive and understanding.
So tonight we are underway on the next phase of this unenviable journey. Mattie is on the bed now watching a Scooby DVD, the hospital room is looking a little less sterile thanks to Mattie's artistic touches and decorating activities (i.e. glow in the dark bugs on the wall, stuffed animals on every gas valve and resuscitation vessel, masks and volcanoes made from model magic, magic swimming fish, baseball hats and a variety of art projects). Mattie is still his same old self, full of life and spirit, wonderfully inquisitive and remarkably insightful. Mattie had to upgrade tonight to a pole that had three IV pumps on it (not just the one that he has been tethered to the last four days), and his biggest concern was what name to give it. He then decided to take it out for a walk around the floor and halls to show off his "upgrade" to everyone (and also in part I think to prove to himself that he could handle maneuvering it around the halls). Needless to say it was a successful journey. Here's hoping this is an indication of what's to come.
August 6, 2008
Wednesday, August 6th, 2008
Wednesday, August 6th, 2008 - I am writing today's entry a little earlier today since Mattie has recovered from the PET scan sedation and is presently out in the hall painting with Liza, a wonderful volunteer with the Child Life Specialist office.
The process of the PET Scan went smoothly. Mattie received his isotope injection in his room and then some Versed (an anti-anxiety med), which made him happy and relaxed (imagine him spaced out and inebriated but not out of control). After I lifted him into the gurney, he was wheeled down to the Nuclear Medicine Center where he received his Propofol injection that works in about 15 seconds. Mattie was unconscious for the entire procedure (he never even saw the machine nor remembered the trip down there) and during this they changed his central line dressing (which can be a traumatic experience with the sticky adhesive).
So, to get to the results, the PET Scan identified two additional tumors: a small tumor in the distal right femur that the bone scan had picked up on (which is the leg bone connecting the hip and the lower leg bone and is just above the knee), as well as a much smaller tumor in the distal left wrist (at the end of the radius, one of the two arm bones). What this will mean is that both of these areas in addition to the two humeri will have to get surgery. The positive spin on all this is that Mattie does not have any tumors present in any of the internal organs or any of the axial/trunk bones (i.e. lungs, pelvis, chest, head, etc) or the lymph system. Also, on a side note, the pathology from the first biopsy of the right humerus was deemed a stage 2 malignant osteosarcoma, which is consistent with the way the cancer is presented.
Both areas will likely have to be biopsied and we are aiming to get that done this Friday. The wrist tumor could be addressed by radiation since the spot is so small and may be a good candidate since it is very well contained and small. We need to discuss this option and will be meeting with Dr. Gagnon here at Lombardi (as well as others) to begin exploring what this might entail. The femur will also have to be operated on but again on all four surgeries we will be working directly with Dr. Bob Henshaw to advise us as to our options including potential second opinions at Hopkins (Dr. Webber) and Seattle (Dr. Conrad) for some of the surgeries. Again, we need to begin discussions with Dr. Bob about these and will do so once we are underway on the chemotherapy.
We met with Dr. Jeff and discussed all of these results and we agreed to begin chemo Thursday morning. We still need to discuss tonight with Kathy, our lead nurse practitioner, the specifics of each dose, routine, administration, onset of side affects, medications, etc., so more on that later, but we're getting going tomorrow.
Mattie will also get a physical therapy evaluation and possibly begin a program in order to strengthen his muscle tone since he will need to be as strong as possible for the post-surgeries. A preschool parent Friend of ours, Kristin Emery, who visited yesterday and who happens to be a Pediatric PT, made an astute observation last night via email that Mattie should start getting PT now and continue on a regimen until surgery, after which PT will continue to be a main routine for Mattie.
We still have many options, alternatives and answers to address regarding Mattie and his chemotherapy plan. For now, all involved agree that we must start chemo as soon as possible on the standard protocol, but we are also all in agreement that as we see how Mattie responds to the chemo, and what the Tumor Board provides input on, and what Dr. Jeff uncovers through his conversations/consultations with other experts in this field, that we will make the right decisions and take the right actions to maximize Mattie's chances for survival. On a side note, Vicki is convinced that Dr. Jeff is related to Patch Adams. Do you remember that movie with Robin Williams? Dr. Jeff has a great rapport with Mattie!
On a lighter note, Mattie had a fantastic morning thanks to a half dozen good buddies who came to visit Mattie in his room. First to arrive was Charlotte, a good buddy from kindergarten, who instantly turned the room into a goofy, laughter-filled environment. The two quickly got into painting in the hall, and were joined by Claire, another good buddy from Kindergarten. Next arrived Kate, Eric and Jaimie (Resurrection buddies) and Zander, another good buddy from kindergarten. So Linda, the Child Life Specialist, ended up entertaining Mattie and his six buddies this morning. They used ModelMagic, paints, stickers, pipe cleaners, played with the I-Spy wall mural and blew bubbles in the hall. Needless to say it was a wonderful thing to see happening. The mental image I have is six kids lined up shoulder to shoulder on the bed, with Mattie in middle, all watching Scooby in a hospital room. For me, that image alone helped redefine for me the cold and ominous images one gets from seeing a hospital bed and IV pump and pole.
Mattie was also showered in gifts once again from his visitors this morning. For Mattie it's like having a mini-birthday each day, which really helps with the minute-to-minute and hour-to-hour existence for both him and us. We cannot thank you enough for all of your generosity. Also, your visit enabled Vicki to get outside and among adults (and non-medical professionals) and to talk. So Thank You!
Also, I got a note from a close friend and former Arthur Andersen colleague, John Bonds, another person who shares something in common with Mattie, who told me that among other things a group of my former Andersen co-workers, have ordered a series of pre-cooked/frozen meals from Let'sDish, which will be delivered to our home, and that can be frozen and when needed heated up in 30 minutes, so thanks! Even if Andersen was taken down by a few foolish guys in Texas, we benefit from the bonds of friendship that were formed while working together!
So, we are trying again for a normal night in the hospital (yeah, these are probably mutually exclusive concepts), and are trying to prepare ourselves for the start of chemo tomorrow.
Note to all: thank you for your comments in the blog. We get notified by email each time a comment is added, and like an invisible hand, the comments are both helpful, informative, heartfelt as well as timely. So thank you and please keep them coming!
The process of the PET Scan went smoothly. Mattie received his isotope injection in his room and then some Versed (an anti-anxiety med), which made him happy and relaxed (imagine him spaced out and inebriated but not out of control). After I lifted him into the gurney, he was wheeled down to the Nuclear Medicine Center where he received his Propofol injection that works in about 15 seconds. Mattie was unconscious for the entire procedure (he never even saw the machine nor remembered the trip down there) and during this they changed his central line dressing (which can be a traumatic experience with the sticky adhesive).
So, to get to the results, the PET Scan identified two additional tumors: a small tumor in the distal right femur that the bone scan had picked up on (which is the leg bone connecting the hip and the lower leg bone and is just above the knee), as well as a much smaller tumor in the distal left wrist (at the end of the radius, one of the two arm bones). What this will mean is that both of these areas in addition to the two humeri will have to get surgery. The positive spin on all this is that Mattie does not have any tumors present in any of the internal organs or any of the axial/trunk bones (i.e. lungs, pelvis, chest, head, etc) or the lymph system. Also, on a side note, the pathology from the first biopsy of the right humerus was deemed a stage 2 malignant osteosarcoma, which is consistent with the way the cancer is presented.
Both areas will likely have to be biopsied and we are aiming to get that done this Friday. The wrist tumor could be addressed by radiation since the spot is so small and may be a good candidate since it is very well contained and small. We need to discuss this option and will be meeting with Dr. Gagnon here at Lombardi (as well as others) to begin exploring what this might entail. The femur will also have to be operated on but again on all four surgeries we will be working directly with Dr. Bob Henshaw to advise us as to our options including potential second opinions at Hopkins (Dr. Webber) and Seattle (Dr. Conrad) for some of the surgeries. Again, we need to begin discussions with Dr. Bob about these and will do so once we are underway on the chemotherapy.
We met with Dr. Jeff and discussed all of these results and we agreed to begin chemo Thursday morning. We still need to discuss tonight with Kathy, our lead nurse practitioner, the specifics of each dose, routine, administration, onset of side affects, medications, etc., so more on that later, but we're getting going tomorrow.
Mattie will also get a physical therapy evaluation and possibly begin a program in order to strengthen his muscle tone since he will need to be as strong as possible for the post-surgeries. A preschool parent Friend of ours, Kristin Emery, who visited yesterday and who happens to be a Pediatric PT, made an astute observation last night via email that Mattie should start getting PT now and continue on a regimen until surgery, after which PT will continue to be a main routine for Mattie.
We still have many options, alternatives and answers to address regarding Mattie and his chemotherapy plan. For now, all involved agree that we must start chemo as soon as possible on the standard protocol, but we are also all in agreement that as we see how Mattie responds to the chemo, and what the Tumor Board provides input on, and what Dr. Jeff uncovers through his conversations/consultations with other experts in this field, that we will make the right decisions and take the right actions to maximize Mattie's chances for survival. On a side note, Vicki is convinced that Dr. Jeff is related to Patch Adams. Do you remember that movie with Robin Williams? Dr. Jeff has a great rapport with Mattie!
On a lighter note, Mattie had a fantastic morning thanks to a half dozen good buddies who came to visit Mattie in his room. First to arrive was Charlotte, a good buddy from kindergarten, who instantly turned the room into a goofy, laughter-filled environment. The two quickly got into painting in the hall, and were joined by Claire, another good buddy from Kindergarten. Next arrived Kate, Eric and Jaimie (Resurrection buddies) and Zander, another good buddy from kindergarten. So Linda, the Child Life Specialist, ended up entertaining Mattie and his six buddies this morning. They used ModelMagic, paints, stickers, pipe cleaners, played with the I-Spy wall mural and blew bubbles in the hall. Needless to say it was a wonderful thing to see happening. The mental image I have is six kids lined up shoulder to shoulder on the bed, with Mattie in middle, all watching Scooby in a hospital room. For me, that image alone helped redefine for me the cold and ominous images one gets from seeing a hospital bed and IV pump and pole.
Mattie was also showered in gifts once again from his visitors this morning. For Mattie it's like having a mini-birthday each day, which really helps with the minute-to-minute and hour-to-hour existence for both him and us. We cannot thank you enough for all of your generosity. Also, your visit enabled Vicki to get outside and among adults (and non-medical professionals) and to talk. So Thank You!
Also, I got a note from a close friend and former Arthur Andersen colleague, John Bonds, another person who shares something in common with Mattie, who told me that among other things a group of my former Andersen co-workers, have ordered a series of pre-cooked/frozen meals from Let'sDish, which will be delivered to our home, and that can be frozen and when needed heated up in 30 minutes, so thanks! Even if Andersen was taken down by a few foolish guys in Texas, we benefit from the bonds of friendship that were formed while working together!
So, we are trying again for a normal night in the hospital (yeah, these are probably mutually exclusive concepts), and are trying to prepare ourselves for the start of chemo tomorrow.
Note to all: thank you for your comments in the blog. We get notified by email each time a comment is added, and like an invisible hand, the comments are both helpful, informative, heartfelt as well as timely. So thank you and please keep them coming!
August 5, 2008
Tuesday, August 5th, 2008
Tuesday, August 5th, 2008 - Well today was as normal a day a six year-old could have who is diagnosed with metastatic osteosarcoma, been operated on the day before and spent the prior night in a strange hospital with his parents. Anyone who has spent a night or more in a hospital knows that it is no place for a sick person. We all had to make adjustments to the small room, tight quarters, steady flow of nurses, technicians and doctors coming through the door, but we survived.
Mattie spent the morning still shaking off the effects of the general anesthesia, which slows the metabolism, not to mention the morphine we had to administer at 3am this morning to address the pain from the line surgery and the tumor in his right arm. Mattie was needless to say restless all night long except for after the morphine. Fortunately with the line the morphine kicks in a lot faster than if administered orally. Mattie, Vicki and Pete played musical sleeping places throughout the night, shifting from the hospital bed to the extra cot to the lazy-boy recliner. The only place Mattie did not sleep was the cot. The hours seemed to pass both slowly and endlessly, yet in great number. It's hard to explain but you tend to lose your sense of time when in the hospital except when marked by an scheduled exam, dressing changing or medicine regimen.
We were fortunate to have once again at our disposal Linda Kim, the Child Life Specialist. Linda and Mattie have a real bond and Vicki and Pete were able to step out this morning for 30 minutes to get some fresh air. Part of the baseline activities include tracking and collecting Mattie's urine for a 24 hour period. We fortunately completed that tonight as this is done to establish his levels of cretin (i.e. an indication of kidney function) prior to beginning chemotherapy.
I am happy to say that the only real dramas for Mattie today were the room change (we are now in C5210) as Mattie was not expecting this, and that Mattie broke the bowl part of his swimming fishbowl automated toy that he was given yesterday. We recovered from the room transition thanks in large part to Linda, who quarantined and portion of hall outside of Mattie's door, and turned it into a painting studio (Mattie got to use syringes and surgery swabs along with water-based paints on 4 foot wide paper that that taped to the walls and floor. Also, fortunately for us, Pete sent Ann Henshaw a note for help in securing a new fishbowl, which Grace Putnam had given Mattie, and which was delivered tonight, so many, many thanks to our support network for making this happen. As childish as it sounds, to a child the automated fishbowl (it uses hidden magnets to move the floating fish magically) is a really big thing and great distraction.
We also received a nice arrangement of flowers from Mrs. Joan Holden, Head of School and the St. Stephens and St. Agnes Community, and although Georgetown apparently has a policy of no flowers in patient rooms in this unit, we can see them from our room, and of course the thoughts are much appreciated. Additionally, we are getting more and more comments on the blog from friends, family and in some cases strangers who share a common bond. The gifts that have been arriving are simply wonderful and so very thoughtful. So many of you have not only thought about us, and about Mattie, but also targeted things to help Mattie and us deal with this time while in the hospital.
We have several visitors today including Tom and Deb Berry (Coach Tom) and their two children, Sheila Zimmet, our dear friend Georgetown Associate Vice President, Kristin Emery, a RCC parent and pediatric PT, Amy Saxton, a co-worker of Pete at Voxiva, and Ann and Abigail Henshaw, who delivered yet another round of care packages including a new fishbowl and a Happy Meal. Abigail and Mattie had a "playdate" in the hospital room during which Mattie proudly showed off his artwork, his room, his IV pole and tubes and then quickly moved to a serious case of goofiness and infectious laughter emanating from both him and Abigail. It was a great way to end the day as Mattie largely forgot about things for a while and got to play with his good buddy Abigail.
We are very appreciative of all those who have been to the blog and posted comments, have sent emails, made phone calls and taken matters into their own hands to do things for us and to help in their own way. Although we want to personally thank each and every one of you for your heartfelt actions, our situation does not allow to do this right now. For any of you who regularly deal with us via email, we are barely returning any emails these days if that is any indication. There is just too much to think of and to deal with concurrently.
Pete's company, Voxiva, Inc, has been both incredibly supportive and understanding of our situation. Not only has each member of the senior management team personally reached out and offered to help in any way humanly possible, but they have left me alone during this time and have both covered my responsibilities and sent statements of support and love.
So tomorrow we are onto the PET/CT Scan. Mattie will go without breakfast and then onto an injection of a isotope an hour before the scan, and then will be knocked out for the PET/CT scan. During the time he is knocked out, the nurses will also remove his surgical dressings from his central line insertion, as this can be painful to the skin. Meanwhile, Pete and Vicki are learning the maintenance involved in maintaining the central line (daily flushings, heparin flushes, cap and dressing changes, etc.).
I know everyone is wishing good thoughts and sending a massive amount of prayers to Mattie for a positive outcome and a speedy recovery. At last count I think Mattie was on two dozen prayer lists in over a six states not to mention international prayers from Europe, Central and South America, Africa and India. It goes without saying that a boy cared for and thought about this much cannot ask for any greater love in this world. That also goes without saying for his parents!
Mattie spent the morning still shaking off the effects of the general anesthesia, which slows the metabolism, not to mention the morphine we had to administer at 3am this morning to address the pain from the line surgery and the tumor in his right arm. Mattie was needless to say restless all night long except for after the morphine. Fortunately with the line the morphine kicks in a lot faster than if administered orally. Mattie, Vicki and Pete played musical sleeping places throughout the night, shifting from the hospital bed to the extra cot to the lazy-boy recliner. The only place Mattie did not sleep was the cot. The hours seemed to pass both slowly and endlessly, yet in great number. It's hard to explain but you tend to lose your sense of time when in the hospital except when marked by an scheduled exam, dressing changing or medicine regimen.
We were fortunate to have once again at our disposal Linda Kim, the Child Life Specialist. Linda and Mattie have a real bond and Vicki and Pete were able to step out this morning for 30 minutes to get some fresh air. Part of the baseline activities include tracking and collecting Mattie's urine for a 24 hour period. We fortunately completed that tonight as this is done to establish his levels of cretin (i.e. an indication of kidney function) prior to beginning chemotherapy.
I am happy to say that the only real dramas for Mattie today were the room change (we are now in C5210) as Mattie was not expecting this, and that Mattie broke the bowl part of his swimming fishbowl automated toy that he was given yesterday. We recovered from the room transition thanks in large part to Linda, who quarantined and portion of hall outside of Mattie's door, and turned it into a painting studio (Mattie got to use syringes and surgery swabs along with water-based paints on 4 foot wide paper that that taped to the walls and floor. Also, fortunately for us, Pete sent Ann Henshaw a note for help in securing a new fishbowl, which Grace Putnam had given Mattie, and which was delivered tonight, so many, many thanks to our support network for making this happen. As childish as it sounds, to a child the automated fishbowl (it uses hidden magnets to move the floating fish magically) is a really big thing and great distraction.
We also received a nice arrangement of flowers from Mrs. Joan Holden, Head of School and the St. Stephens and St. Agnes Community, and although Georgetown apparently has a policy of no flowers in patient rooms in this unit, we can see them from our room, and of course the thoughts are much appreciated. Additionally, we are getting more and more comments on the blog from friends, family and in some cases strangers who share a common bond. The gifts that have been arriving are simply wonderful and so very thoughtful. So many of you have not only thought about us, and about Mattie, but also targeted things to help Mattie and us deal with this time while in the hospital.
We have several visitors today including Tom and Deb Berry (Coach Tom) and their two children, Sheila Zimmet, our dear friend Georgetown Associate Vice President, Kristin Emery, a RCC parent and pediatric PT, Amy Saxton, a co-worker of Pete at Voxiva, and Ann and Abigail Henshaw, who delivered yet another round of care packages including a new fishbowl and a Happy Meal. Abigail and Mattie had a "playdate" in the hospital room during which Mattie proudly showed off his artwork, his room, his IV pole and tubes and then quickly moved to a serious case of goofiness and infectious laughter emanating from both him and Abigail. It was a great way to end the day as Mattie largely forgot about things for a while and got to play with his good buddy Abigail.
We are very appreciative of all those who have been to the blog and posted comments, have sent emails, made phone calls and taken matters into their own hands to do things for us and to help in their own way. Although we want to personally thank each and every one of you for your heartfelt actions, our situation does not allow to do this right now. For any of you who regularly deal with us via email, we are barely returning any emails these days if that is any indication. There is just too much to think of and to deal with concurrently.
Pete's company, Voxiva, Inc, has been both incredibly supportive and understanding of our situation. Not only has each member of the senior management team personally reached out and offered to help in any way humanly possible, but they have left me alone during this time and have both covered my responsibilities and sent statements of support and love.
So tomorrow we are onto the PET/CT Scan. Mattie will go without breakfast and then onto an injection of a isotope an hour before the scan, and then will be knocked out for the PET/CT scan. During the time he is knocked out, the nurses will also remove his surgical dressings from his central line insertion, as this can be painful to the skin. Meanwhile, Pete and Vicki are learning the maintenance involved in maintaining the central line (daily flushings, heparin flushes, cap and dressing changes, etc.).
I know everyone is wishing good thoughts and sending a massive amount of prayers to Mattie for a positive outcome and a speedy recovery. At last count I think Mattie was on two dozen prayer lists in over a six states not to mention international prayers from Europe, Central and South America, Africa and India. It goes without saying that a boy cared for and thought about this much cannot ask for any greater love in this world. That also goes without saying for his parents!
August 4, 2008
Monday, August 4th, 2008
Monday, August 4th, 2008 - We write this from the Pediatric Intensive Care Unit as this is where all Oncology patients stay when they are "in-patient" at the hospital. Mattie had a very long and hard day today, starting first with an IV in the Clinic and then followed by a PET/CT scan, which unfortunately, we were not able to do. Mattie was very traumatized by the IV experience and by his growing awareness and knowledge that something is very wrong with him and that he is going to be spending a lot of time in hospitals. As a result of getting five IVs in the last seven days, the tests and scary machinery, we could not get Mattie to get on the PET/CT scanner table today, and had to lose the testing window.
After that ordeal, we then moved immediately down to Pediatric Day Surgery to check Mattie into Pre-Op, for his double line brouviac insertion (this is the central line). The central line has been nicknamed "sparky" and allows the administration of medications without the need to stick him with an IV each time. The tube exits his skin about mid-way in the center of his chest and the rest of the tubing snakes upwards and enters a central vein in the neck that dumps into the bloodstream just before the heart. The surgery went well and Mattie is recovering well from the procedure. Albeit disconcerting to see tubing extending and hanging unnaturally from your child's chest, I know it is best for him as it will avoid him needing to get stuck every time, and there is going to be a tremendous amount of sticking across the next year.
A piece of bad news was also given to us today as well. Apparently, the bone scan performed on Friday also picked up on some suspect areas in his distil right femur (just about the right knee) as well as the right ischium (inside, lower part of the pelvis). A PET Scan will determine if these areas are suspicious or not, which has been scheduled for Wednesday at 1:00pm (Mattie will get sedation for this scan to ensure it happens). If the areas are suspicious then biopses will likely be needed. Again, the PET Scan will help confirm this and during the PET Scan, they will take CT Scans of all his bones (so no more x-rays will be needed). Best case is these areas turn out to be nothing, at which point we will go back to focusing on just the two arms.
Also today, the Tumor Board held a session, and although we do not attend these meetings, we understand that a group of leading Pediatric Oncology Doctors all get together and have a meeting to review specific cancer cases. Today, only Mattie's case was presented given that his osteosarcoma is very rare when seen in six year-olds and given that it is metastatic synchronous osteosarcoma of the Humeri (meaning the cancer is showing up in the exact same location in the same bone on each side of the body. Several of the Doctors involved directly in his case presented and input, comment and advice was provided. One thing was for certain: everyone agreed that the standard protocol for chemo is the right one knowing what we know now and that we should get going on it. This group will continue to regularly meet and discuss Mattie's case, and both Dr. Toretsky and Dr. Henshaw will continue to reach out to their vast network of experts in their respective areas and will seek most appropriate and effective path to get Mattie well once again.
So, chemotherapy will not start tomorrow but will likely start on Thursday, which represents only a two day lost in time, since the PET scan needs to occur before the chemo begins. Although we have not fully digested nor understand what chemo will entail (i.e. side-affects, issues, etc.), we are trying to prepare ourselves for what will conclusively be a horrible experience. Mattie has been a real trooper through the pain of the last 13 days, but it is starting to get to him. Yesterday, we noticed that Mattie really had started internalizing his situation as he began to get very scared and anxious. We are doing all that we can to address this but unfortunately we do not have the luxury of time on our side, and so we must be quick and precise about the circumstances.
So tomorrow we will work on getting Mattie recovered from the surgery. His incisions will begin to hurt more and we will be trained on how to change his dressings (as we will do this once a week when not in the hospital), change the caps/lids on Sparky and clean Sparky once a day with a three mL shot of Heparin (to prevent the tubes from clotting up and clogging).
Mattie's hospital room is C5205 but we will be moving to another room tomorrow. The room is tiny and between the furniture and hospital bed there is not much room for any other things. Ann Henshaw also visited us tonight and brought over an armload of just some of the things that friends have been giving to her to give to us, so thank you all for your warm greetings and kind hearts.
I think to most unsettling point right now is that we just do not know yet what the full parameters of the situation are and where the cancer exists/has spread to. The faster we can get to that the more we can focus on the other unsettling points like the chemo schedule and surgical options. We will keep you posted on our events this week but we will likely be here through the weekend.
After that ordeal, we then moved immediately down to Pediatric Day Surgery to check Mattie into Pre-Op, for his double line brouviac insertion (this is the central line). The central line has been nicknamed "sparky" and allows the administration of medications without the need to stick him with an IV each time. The tube exits his skin about mid-way in the center of his chest and the rest of the tubing snakes upwards and enters a central vein in the neck that dumps into the bloodstream just before the heart. The surgery went well and Mattie is recovering well from the procedure. Albeit disconcerting to see tubing extending and hanging unnaturally from your child's chest, I know it is best for him as it will avoid him needing to get stuck every time, and there is going to be a tremendous amount of sticking across the next year.
A piece of bad news was also given to us today as well. Apparently, the bone scan performed on Friday also picked up on some suspect areas in his distil right femur (just about the right knee) as well as the right ischium (inside, lower part of the pelvis). A PET Scan will determine if these areas are suspicious or not, which has been scheduled for Wednesday at 1:00pm (Mattie will get sedation for this scan to ensure it happens). If the areas are suspicious then biopses will likely be needed. Again, the PET Scan will help confirm this and during the PET Scan, they will take CT Scans of all his bones (so no more x-rays will be needed). Best case is these areas turn out to be nothing, at which point we will go back to focusing on just the two arms.
Also today, the Tumor Board held a session, and although we do not attend these meetings, we understand that a group of leading Pediatric Oncology Doctors all get together and have a meeting to review specific cancer cases. Today, only Mattie's case was presented given that his osteosarcoma is very rare when seen in six year-olds and given that it is metastatic synchronous osteosarcoma of the Humeri (meaning the cancer is showing up in the exact same location in the same bone on each side of the body. Several of the Doctors involved directly in his case presented and input, comment and advice was provided. One thing was for certain: everyone agreed that the standard protocol for chemo is the right one knowing what we know now and that we should get going on it. This group will continue to regularly meet and discuss Mattie's case, and both Dr. Toretsky and Dr. Henshaw will continue to reach out to their vast network of experts in their respective areas and will seek most appropriate and effective path to get Mattie well once again.
So, chemotherapy will not start tomorrow but will likely start on Thursday, which represents only a two day lost in time, since the PET scan needs to occur before the chemo begins. Although we have not fully digested nor understand what chemo will entail (i.e. side-affects, issues, etc.), we are trying to prepare ourselves for what will conclusively be a horrible experience. Mattie has been a real trooper through the pain of the last 13 days, but it is starting to get to him. Yesterday, we noticed that Mattie really had started internalizing his situation as he began to get very scared and anxious. We are doing all that we can to address this but unfortunately we do not have the luxury of time on our side, and so we must be quick and precise about the circumstances.
So tomorrow we will work on getting Mattie recovered from the surgery. His incisions will begin to hurt more and we will be trained on how to change his dressings (as we will do this once a week when not in the hospital), change the caps/lids on Sparky and clean Sparky once a day with a three mL shot of Heparin (to prevent the tubes from clotting up and clogging).
Mattie's hospital room is C5205 but we will be moving to another room tomorrow. The room is tiny and between the furniture and hospital bed there is not much room for any other things. Ann Henshaw also visited us tonight and brought over an armload of just some of the things that friends have been giving to her to give to us, so thank you all for your warm greetings and kind hearts.
I think to most unsettling point right now is that we just do not know yet what the full parameters of the situation are and where the cancer exists/has spread to. The faster we can get to that the more we can focus on the other unsettling points like the chemo schedule and surgical options. We will keep you posted on our events this week but we will likely be here through the weekend.
August 3, 2008
Sunday, August 3rd, 2008
Sunday, August 3rd, 2008 - Tomorrow, Monday, we have to report to the clinic by 9:00am, based on a call we got tonight from Dr. Jeff. They want to do a PET Scan, which uses a radioisotope (different than the one used for the bones scan) to identify high metabolic areas. The PET scan is a complement to the CT Scan, Bone Scan, MRI and X-rays that have been done to date, as it focuses on additional areas. They are doing this only to rule out anything else and to be completely sure the cancer has not metastasized elsewhere, since we have been very surprised by Mattie's situation to date.
The doctors Jeff T., Bob H. and Allison Lax (Radiologist), have been fast-tracking (and bending over backwards to accommodate) Mattie and prioritizing him over other patients to get him to the front of the line for these tests. We are very grateful that we can get moved to the front of the lines in spite of the situation. In the afternoon Mattie will have general anesthesia and a surgery to get the central line implanted. We talked Mattie through this today and he understood the benefit of not getting stuck each time with a needle. Once installed, the line will be where all injections are made thereby eliminating the need to get stuck by the nurses of worse, by Pete and Vicki at home) We both know tomorrow will be rough, but we will get through it as we have to.
Dr. Jeff, Bob and others have been working their networks since Friday and over the weekend to reach anyone and everyone who might have a meaningful contribution or option about Mattie's situation. Remarkably, we are struggling to find another documented case of metastatic synchronous osteosarcoma affecting the humeri (both upper arm bones). Mattie could conceivably be the first documented case. Just our luck.
On a lighter note, Mattie had a great weekend. We got a call form Julie Frye on Saturday morning who (bless her heart) had been working with Ann, Margaret and Grace to come up with a variety of offerings to support us this weekend. We settled on Pete and Mattie going to spend time with Julie's husband, Rob, and Vicki going with Julie to Grace's house where Ann and Margaret were waiting. Needless to say, Mattie spent the afternoon fooling around with Alex (Rob and Julie's son) and doing six year-old things (forts, throwing stuffed animals down the staircase, swimming, watching speed racer, etc.), while Vicki had a great time socializing with her friends and attempting to be a normal person for a few hours. We ended the evening with dinner at a Mexican restaurant with the Fryes and having a wonderful and remarkably "normal" day. So many thanks to Julie, Rob, Ann, Grace and Margaret for making Saturday a good day.
Additionally, we were thankful for a good Sunday. After tooling around in the morning, Mattie and Pete went to meet JP and JJ (dog) at the park for a long walk that took us down Donaldson Run and in and out of brooks and interactions with lots of other big dogs (JJ apparently has no concept that he is any smaller than any other dog). Afterwards, Mattie and Pete hit the drive-thru for some large vanilla shakes and then went on to Home Deport (no summer weekend would be complete without a trip to Home Depot). While Vicki hit Target with a vengeance (getting a list of things too long to mention here but all related to our expected hospital stay this week, and of course Mattie, when Mattie starts getting chemo), Mattie and Pete planted the two pine tree that Frances (a friendly neighbor in the complex) gave to us for our collection. By the way, our planting activities included play time in the sandbox, water fights with the hose and of course periodic visits with JJ.
Meanwhile, we continue to have very dedicated friends researching clinical trials, searching for doctors and contacts (Thanks to Logan Kleinwaks!), making lists of research studies and papers, arranging schedules for mental health breaks, formulating meal plans, fielding information requests, planning activities for Mattie, sending gifts to Mattie and us, and distributing emails to spread the word about Mattie's situation. We got a call on Saturday from Joan Holden, Head of School for St. Stephens and St. Agnes, essentially offering us the resources of the St. Stephens and of course blessings, to help Mattie.
Also, we received over the weekend over a half dozen gifts including puzzles, games, toys, books, balloons and stuffed animals (several of which were Jack Russell Terriers, so it's clear several people are reading the blog), not to mention a lot of cards with warm messages, statements of love and support, and of course blessings. We cannot thank you enough for these actions and selfless declarations of love, as they really keep us from going to tears and falling apart every other minute. A special thanks to you who made us smile this weekend with your thoughtfulness and caring. Mattie has not been this surprised or excited since his birthday, so for a six year-old that's saying something.
Our family support has been needless to say amazing. We are presently planning trips for each of the grandmothers as well as Pete's sister-in-law/brother, Vicki's childhood friend from Manhattan (Karen) and several others who at a moment's notice are ready to get on a plane/train/automobile to get here if we need them. Although corny sounding, I am truly amazed by the dedication and support people have for us. Truly amazed.
Also, I want to thank all of those who have blogged us and left such wonderful comments and statements of support, not to mention all those who have emailed us with caring comments. From fast-made friends who share common ailments/histories, to long lost acquaintances and special friends, we thank you all for what you have done and for reaching out to us in our most dire time of need.
Although twelve days ago, we were the parents of a healthy, six year-old boy, we begin tomorrow instead, the parents of a six year-old son who has a vary rare occurrence of bone cancer and who is starting out on a very long road of chemotherapy and surgery.
The doctors Jeff T., Bob H. and Allison Lax (Radiologist), have been fast-tracking (and bending over backwards to accommodate) Mattie and prioritizing him over other patients to get him to the front of the line for these tests. We are very grateful that we can get moved to the front of the lines in spite of the situation. In the afternoon Mattie will have general anesthesia and a surgery to get the central line implanted. We talked Mattie through this today and he understood the benefit of not getting stuck each time with a needle. Once installed, the line will be where all injections are made thereby eliminating the need to get stuck by the nurses of worse, by Pete and Vicki at home) We both know tomorrow will be rough, but we will get through it as we have to.
Dr. Jeff, Bob and others have been working their networks since Friday and over the weekend to reach anyone and everyone who might have a meaningful contribution or option about Mattie's situation. Remarkably, we are struggling to find another documented case of metastatic synchronous osteosarcoma affecting the humeri (both upper arm bones). Mattie could conceivably be the first documented case. Just our luck.
On a lighter note, Mattie had a great weekend. We got a call form Julie Frye on Saturday morning who (bless her heart) had been working with Ann, Margaret and Grace to come up with a variety of offerings to support us this weekend. We settled on Pete and Mattie going to spend time with Julie's husband, Rob, and Vicki going with Julie to Grace's house where Ann and Margaret were waiting. Needless to say, Mattie spent the afternoon fooling around with Alex (Rob and Julie's son) and doing six year-old things (forts, throwing stuffed animals down the staircase, swimming, watching speed racer, etc.), while Vicki had a great time socializing with her friends and attempting to be a normal person for a few hours. We ended the evening with dinner at a Mexican restaurant with the Fryes and having a wonderful and remarkably "normal" day. So many thanks to Julie, Rob, Ann, Grace and Margaret for making Saturday a good day.
Additionally, we were thankful for a good Sunday. After tooling around in the morning, Mattie and Pete went to meet JP and JJ (dog) at the park for a long walk that took us down Donaldson Run and in and out of brooks and interactions with lots of other big dogs (JJ apparently has no concept that he is any smaller than any other dog). Afterwards, Mattie and Pete hit the drive-thru for some large vanilla shakes and then went on to Home Deport (no summer weekend would be complete without a trip to Home Depot). While Vicki hit Target with a vengeance (getting a list of things too long to mention here but all related to our expected hospital stay this week, and of course Mattie, when Mattie starts getting chemo), Mattie and Pete planted the two pine tree that Frances (a friendly neighbor in the complex) gave to us for our collection. By the way, our planting activities included play time in the sandbox, water fights with the hose and of course periodic visits with JJ.
Meanwhile, we continue to have very dedicated friends researching clinical trials, searching for doctors and contacts (Thanks to Logan Kleinwaks!), making lists of research studies and papers, arranging schedules for mental health breaks, formulating meal plans, fielding information requests, planning activities for Mattie, sending gifts to Mattie and us, and distributing emails to spread the word about Mattie's situation. We got a call on Saturday from Joan Holden, Head of School for St. Stephens and St. Agnes, essentially offering us the resources of the St. Stephens and of course blessings, to help Mattie.
Also, we received over the weekend over a half dozen gifts including puzzles, games, toys, books, balloons and stuffed animals (several of which were Jack Russell Terriers, so it's clear several people are reading the blog), not to mention a lot of cards with warm messages, statements of love and support, and of course blessings. We cannot thank you enough for these actions and selfless declarations of love, as they really keep us from going to tears and falling apart every other minute. A special thanks to you who made us smile this weekend with your thoughtfulness and caring. Mattie has not been this surprised or excited since his birthday, so for a six year-old that's saying something.
Our family support has been needless to say amazing. We are presently planning trips for each of the grandmothers as well as Pete's sister-in-law/brother, Vicki's childhood friend from Manhattan (Karen) and several others who at a moment's notice are ready to get on a plane/train/automobile to get here if we need them. Although corny sounding, I am truly amazed by the dedication and support people have for us. Truly amazed.
Also, I want to thank all of those who have blogged us and left such wonderful comments and statements of support, not to mention all those who have emailed us with caring comments. From fast-made friends who share common ailments/histories, to long lost acquaintances and special friends, we thank you all for what you have done and for reaching out to us in our most dire time of need.
Although twelve days ago, we were the parents of a healthy, six year-old boy, we begin tomorrow instead, the parents of a six year-old son who has a vary rare occurrence of bone cancer and who is starting out on a very long road of chemotherapy and surgery.
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