Friday, August 1st, 2008

Friday, August 1st, 2008 - Bad news: Mattie's cancer has matastisized to his other humerus, as proven by the CT scan and bone scan taken today. Mattie's condition is now considered a Metastatic Synchronous Osteosarcoma, meaning that it has appeared in both upper humeri. The CT Scan of the lungs proved there is no spread to the lungs, which is a good thing, but the cancer now appearing in both arms will mean surgery on both arms and perhaps extended chemotherapy, as well as a decreased survival rate. Mattie will still begin chemo on Tuesday and will likely be admitted on Monday to get his central line put into his chest. We'll do addtional xrays of the bones on Monday just to be sure.

I'll share more when I can but we're just trying to comprehend what this all means, so please pray for us.

Thursday, July 31st, 2008

Thursday, July 31st, 2008 - We had our meeting with Dr. Jeff this afternoon, and Mattie begins Chemo on Tuesday, August 5th. Although we have a second CT Scan of the lower part of the lungs (that were not clear from the first CT), a CT Scan of the arm (for a baseline image) and a Bone Scan tomorrow, we are scheduling Mattie to begin his chemo regimen on Tuesday.

Chemo - Mattie will be getting three drugs: Doxorubicin (red), Cisplatin (clear) and Methotrexate (yellow). The cycle will go as follows:

• Week 1 - Both Doxorubicin and Cisplatin will be administered. The Doxorubicin requires continuous infusion over a 48 hour period and the Cisplatin takes 4 hours to be administered. This will require in-patient treatment where Mattie will be admitted and will stay in the in-patient oncology unit for 3 days or so, and then will be released.
• Week 2 - Recovery time at home.
• Week 3 - Recovery time at home.
• Week 4 - Methotrexate will be administered over a 4 hour period (again, in-patient administration in the oncology unit). This will require 12-16 hours of hydration first, and then the administration of the drug. The administration will then be followed by more hydration, and then steady monitoring for 3 to 5 days to make sure the levels of the drugs in his system are reduced, at which point he will be discharged.
• Week 5 - Another dose of Methotrexate (see above description).

So the above items compose a cycle. We have two cycles to do first, and then Mattie will under-go surgery on the arm to remove the diseased tissue. Chemo is done first since there is the chance of not only stopping growth of the cancer and killing it, but more importantly, the tumor can shrink thereby reducing the extent of surgery required. Surgery will then be followed by at least 4 more cycles of chemo (as described above, except that the Cisplatin will not be included in the last two cycles) to hopefully eradicate the cancer once and for all. So, if all goes as planned, then with holidays and extra time for the non-planned issues that might arise, Mattie could be finishing up with his chemo and surgery by his 7th birthday in April 2009.

Each cycle will require Mattie to be staying at the hospital probably 3-5 days during week 1, and 4-5 days during weeks 4 and 5. Fortunately, both Vicki and Pete can stay over with him, so we are starting to think about the arrangements for next week, and how best to handle the logistics.

We are trying to not only digest and process all this information, but we also need to make decisions about whether Mattie gets a port or a line (catheter) inserted into his chest to receive the medications. Both options have pros and cons associated with each so we are trying to make the right decisions while considering what will be the best and least impacting for Mattie. The port or line will eliminate the need to start an IV (requiring a venapuncture each time) whenever Mattie needs injections of any sort (since he will be getting so many). Plus it makes living with this a little less painful.

The chemo has all kinds of negative side affects that we are also trying to come to grips with, and that will require a variety of different medicines (to treat the nausea, to protect his hearing and heart muscle, to deal with the mucositis, to bring up his white blood cell count and to mitigate/prevent other negative side affects from occurring).

We are also evaluating Mattie's possible participation in a clinical trial that addresses post-surgery treatment options (all chemo). We have a lot of questions about possible participation, but we will have to make a decision by Monday.

Dr. Jeff and team spent three hours talking with us today to start getting us grounded in what we are facing. On a lighter note, Dr. Jeff explained to Mattie what was happening to him and what he was facing in a way that was easy for Mattie to understand.

On a lighter note, you should see a sequence of pictures of Mattie stomping dead the "bug" that is in his arm (the bug was made out of Playdough that Dr. Jeff created for Mattie to then squash). Dr. Jeff explained to Mattie using Duplos first, that some parts of his arm didn't behave correctly and kept growing when they should not have, and that using medicine and with "Mr. Henshaw's" surgery, that we were going to (as Mattie says) "kill those bugs" in his arm. Dr. Jeff then made the Playdough bug, which Mattie then promptly squashed, and then posted on the wall of the clinic.

Mattie understands what will have to happen from a high level, and we'll just cross the other bridges when we get to them.

More to be posted tomorrow as we start getting smart about chemo.

Wednesday, July 30th, 2008

Wednesday, July 30th, 2008 - Matttie had a good day although we had to start him on Morphine for pain in his arm. The Morphine is working and Mattie appears to be experiencing less discomfort. The day consisted of hanging around the house, playing in the sand box, and trip to Roosevelt Island to drive his remote controlled boat, building a fort in the living room, trips to see JJ the Jack Russell Terrier and watching some Scooby-Doo upstairs.

Vicki and Pete spent the day making and fielding phone calls from a variety of people: Jennifer, our Nurse Manager, (coordinating his remaining tests), Kathy, his Nurse practitioner (regarding scripts for medicine and tests), Jeff, his Oncologist (regarding pain, plans for our pending discussions), Denise, our Social Worker (for resources) and a variety of other seemingly small details that added up to a lot.

We also received some flowers, a balloon with a teddy bear, a care package of things for each of us and some toys and puzzles, all of which were greatly appreciated and served as a reminder that we are blessed with family and friends who are thinking about us.

Thanks to a good friend, Grace Putnam, we got connected by phone last night to Allison Portnoy, the mother of William, who had osteosarcoma as well, and who went through the whole treatment process that we are presently dealing with. Allison took a significant amount of time last night to share with Vicki her experiences, facts, opinions and lessons learned from going through this ordeal with her son. We're glad to say that William completed his chemo over a year ago and surgery to remove the bone tumor, and is returning back to the normal activities of a ten year old. It gives us hope. Thank you Allison!

Thanks again to Bob and Ann Henshaw, who took time out last night at 10:30pm to talk us through a series of questions, doubts and fears about Mattie's treatment. Having friends like this is not only the best medicine but it makes each issue a little more manageable to deal with. Bob also sent along a site, CureSearch, that I will post to this blog under a links section that i am working on presently. For those of you curious in osteosarcoma, the site is filled with a lot of good information http://www.curesearch.org/for_parents_and_families/newlydiagnosed/. It is put together by the Children's Oncology Group (COG), which is an international organization composed of all the leading Doctors/Researchers in this field (several of Mattie's Docs are members of this distinguished group). We are building a list of contacts at the leading treatment facilities in the country specializing in pediatric oncology: Anderson in (TX), Childrens (DC), Lombardi (DC), Sloan-Kettering (NY), Dana Farber (MA), NIH (MD) and others so that we can get smarter and if needed, go see other professionals. Many thanks also to Team Kleinwaks, who continue to scour the Internet as another set of eyes/ears on this topic and collecting information for us.

Today, we are off to the Clinic to get a hearing test for Mattie, one of the baseline tests that Mattie will get before beginning chemo. The baselines are established for the major functions of the body and selected organs so that the doctors can track the impact of the chemo on him. We will then leave Mattie with the Art Therapists, Jenny and Jessie, and sit with Dr. Jeff to begin discussions about his treatments.

Tomorrow will consist of a battery of tests for Mattie. He is getting a second CT Scan of the lungs (since the first one was not clear enough due to the anesthesiology and his lying flat), a Bone Scan (he'll get some Versed, an anti-anxiety medication to calm him down), an IV will be put in some that NUCs can administer the contrast agent for the scan, as well as an Echo cardiogram (part of the baseline tests). Since the staging tests are almost done, we are hopeful that Mattie can begin his chemo as early as next week.

Finally, we emailed out this blog to many family, friends and colleagues, and we have been getting dozens of emails, calls and offers of support. So to those who have been so kind with your well wishes, we thank you fromt he bottom of our hearts!

Tuesday, July 29th, 2008

Tuesday, July 29th, 2008 - Mattie had a tough day recovering from vomitting over night from the anesthesia. But, Mattie was his usual tough (and incapable of sitting still) self, and insisted on checking if JJ (the Jack Russell Terrier also seen in the slide show) was up and about. Sure enough, at 6:35am this morning (bless his soul), JP de Andino and JJ were up and about, so we had fun for over an hour, playing around with sticks and pine cones.

The rest of the day was a wash as we waited to be called to the hospital to see if we could be squeezed into a CT Scan or a Bone Scan. Mattie and Pete went to Toys-R-Us to get a prize for Mattie. Mattie (acting like an Army General) made a B-line for the remote controlled boats (shocker for those of you who have asked what he is saving his pennies for and been told "for a boat.... a big boat"). After a brief interlude with the Wendys drive-thru for a Frosty and a burger, Mattie and Pete returned home, Vicki did grocery shopping in the interim while Mattie and Pete hung out watering plants, building an umbrella fort, taking medications and being goofy.

We have been blessed with a number of good friends who are actively scouring the Internet for a variety of information (best Docs, best Oncologists, best facilities, etc), so a special thanks go out to Lorraine, Logan and Jonathan Kleinwaks, who have not only supported Vicki (and Pete indirectly) through thick and thin, but have gone above and beyond the defintion of Friendship.

So the CT Scan was not as "clear" as desired primarily because Mattie was knocked out on Anethesia and was laying flat, so we will have to do the CT Scan again. Also, Dr. Toretsky is trying to move Mattie's Bone Scan up so that we can keep the torrid pace of his staging going. Mattie could conceivably have a surgery on Friday to insert a port into his upper chest area (for the regular chemo shots will will be receiving shortly).

Meanwhile, we have been receiving excellent care (for the first time in my life we believe we are actually experiencing what health care should be and not what people talk about it being). Dr. Allison Lax, the Radiologist who performed the Biopsy, followed-up with us today and actually took a second call from Mattie "to tell her he got a motor boat from the toy store this morning". Also, Ann Henshaw, wife of Bob Henshaw and Mattie's surgeon and earth-bound angel, has been calling and been unrelenting in her determination to have playdates, activities and free time for Mattie this week so that he has some kind of "normalcy" in his life. So, once again, we are blessed.

Of course our Families have been nothing but superbly supportive and completely there for us. Without them we would be completely lost. We cannot say enough to you, so please know the debt of graditude, love and caring that we owe to you.

So, tomorrow may be tests, short-notice appointments and God knows what as we trudge towards finishing Mattie's Staging diagnostics, but we are trying to hang in there for Mattie. Once again, thank you to all those who have sent emails, called, text messaged and been watching out for us. As a sign of how well loved we are (to boast for a moment), we sent out an email and a link to this blog to a number of people tonight after 10pm and within minutes we had over a half dozen replys back from all around the World (the US, South America, Africa and India). I don't know about you, but in my mind that is the definition of love.....

Monday, July 28th - Biopsy and CT Scan

Monday, July 28th, 2008 - We arrived at the hospital at 8am, and after waiting around for 25 minutes, Pete called Betsy Moran, the RN in the Pediatric Surgery ward. Five minutes later we were on our way to the ward. Mattie was scheduled for a bone biopsy of the right humerus as well as a CT Scan of the lungs to determine if the cancer had spread to the lungs.

After Mattie took some liquid containing Midazolam (an anti-anxiety drug also known as Versed), he was happy as a clam, watching Happy Feet on one of the center's portable DVD players and hanging out with his buddy Jenny, one of the art therapist from the Clinic, and Linda Kim, a Child Life Specialist, who normally handles the kids who are in-patient (i.e. stay at the hospital at least one night while under a treatment program). The Midazolam helped Mattie deal with the scary things that were going to happen to him, and we were pleased that he handled everything without getting upset or traumatized.

Linda brought with her a "Startlight" welcome bag complete with cool shades, a cup, pen, notebook and a sign-my-name pillow all contained in a neat green bag. The Starlight Program is specifically designed for kids who are dealing with any kind of serious and life-altering diseases/traumas. We need to learn more about this program, but Linda did provide us with a registration form, so we will go investigate the program. Jenny brought Mattie a Pirates of the Caribbean fold out book that expands into a 3-D play book complete with cut-out characters. So he was doing well in terms of preparing him for the day's activities.

On hand for the Procedure was quite a grouping of docs: Bob Henshaw came over from Childrens along with his lead Radiologist, Dr. James S. Jelinek, along with Dr. Allison Lax (a Pediatric Radiologist who performed the biopsy and CT Scan), Dr. Jivan, the Anesthesiologist who were quite wonderful and two additional Radiological Nurses. Dr. Toretsky stopped down during the procedure as well. The team reviewed Mattie's MRIs and the good news so far is that the cancer appears to be contained to just the upper portion of the humerus, but of course we need to check the rest of the body. Mattie went under general anesthesia (the agent used for the general anesthesia was Sevoflurane, and he had Propofol in addition to the Tylenol 3 and the Midazolam) so he is taking some time to come out of the fog and haze.

The Biopsy results are expected within three to four days and we already have a follow-up appointment with Dr. Toretsky on July 31st. The initial look at the cells from the biopsy practically confirms the clinical diagnosis of osteosarcoma, but we'll wait for the confirmation. The preliminary bloodwork looks good but we may need to do some follow-up work. The CT Scan was a little obscured so we may need to do another CT Scan on the lungs if the docs require it as we want the clarity and confidence. Last up in terms of the staging activities (i.e. the diagnostic tests requires to properly assign a stage for Mattie's cancer) should be the bone scan that is scheduled for August 1st (Friday), during which we will hopefully confirm that the cancer is not present in any other bones in the body.

For now, we will try to return to as much of a normal routine as possible. We need to be careful with Mattie's physcial activities because of the tumor in his arm, Mattie could break the bone quite easily if he plays rough. Mattie is now is reluctant to use his right arm all together so we just have to be aware of this whenever he moves.

Debbie Pollak, his art teacher from St. Stephens, is trying to accommodate Mattie's schedule this week to allow him to participate in a few days of the art camp that he was enrolled in this week. Bob Weiman, the Head of the Lower School at St. Stephens, has offered any help that he can, so we are once again surrounded with helpful and caring friends. Thank you Debbie and Bob!

Please keep your fingers crossed that this cancer has not spread to anywhere else. If the cancer is only isolated in his arm bone, then we are still looking at a year of chemo and surgical removal of his arm bone, and we would not have to worry about additional diagnostics or treatment regimens and a brighter prognosis.

Day Four

July 26th, 2008 - Thanks to good friends we were able to do normal things. In the morning, Mattie and Pete met up with JP de Andino and of course JJ, the Jack Russell Terrier, in the Potomac Overlook Park in Arlington, VA. Mattie had been promised the chance to walk JJ on a leash, so JP was kind enough to meet us at the park for a walk. We had a great time and Mattie walked JJ the entire time while collecting sticks for himself and JJ.

In the afternoon, Mattie, Vicki and Pete stopped by to see one of Vicki's colleagues, Beth Powell, who shares something in common with Mattie. She gave Mattie a black and white stuffed puppy dog, who Mattie promptly named "Woof". Woof now has a makeshift collar, tag, leash, and plans to accompany Mattie on his hospital visits. Beth, thank you for everything!

In the afternoon, our good friends going back to Resurrection Children's Center days, Rob, Julie and Alex Frye, invited us over for a swim in the complex's pool and for a cookout. Alex and Mattie have been buddies since the first days at RCC, and they have been great friends ever since. It was beautiful weather so Rob, Alex, Mattie and Pete goofed around for over an hour in the pool playing splash fights and shark attack. Julie then prepared a wonderful meal of chicken, hot dogs, fresh veggies and rice pilaf for everyone, capped off with ice cream sundaes and fresh fruit. It was a delicious meal, great conversation and most importantly a great play date for Mattie.

Once again, the good Lord took care of us as the arms of our good friends wrapped around us. Many Thanks Rob and Julie and Beth!

Mattie's Testing Schedule July 28th and August 1st

On Monday, July 28th, 2008, Mattie will be getting two tests: one will be a Bone Biopsy of his upper right Humerus and two, will be a CT Scan of his lungs/chect. The Bone Biopsy is being done to collect cells from both within his arm bone and outside of the bone where there is significant calcification (the formation of bone material) in his soft tissues (i.e. muscle). By the way, the clacification (the cells attempting to grow new bone in the muscle tissue) and the formation of nerve endings in the surface areas of those cells is the source of pain for Mattie.

We expect to get results within 3-4 days. We have a follow-up scheduled with Dr. Toretsky on Thursday at 3pm ET, at which we should have the results of the biopsy and CT Scan (see below). As an output of the CT Scan, the cells will be collected, cultured and profiled to confirm the type of cells and cancer he is dealing with. The CT Scan is being done on the lungs and chest since in 90% of the cases where there is metastasis (i.e. the spread of cancer to other organs and/or systems of the body) the lungs are the prime target in addition to other bones. The hoped-for outcome of this procedure is a negative result for the presence of any lung tissue with suspicious masses, lesions or nodules. If something is found, we will have to go through more tests that are likely to be more invasive and definitive. More to come when we get results.

On Friday, August 1st, 2008, Mattie will undergo a bone scan which will scan each bone in the body for masses or suspicious areas. The hoped-for outcome of this procedure is a negative readout on the presence of any additional areas affected by the cancer. If something returns as a positive find, then Mattie will likely have to provide bone samples (a very painful procedure) from a variety of locations in addition to added blood work and screens. More to come when we get results.

Day Three

July 25, 2008 - After another sleepless night for Pete and Vicki, Mattie went for an MRI and blood work at Lombardi. We arrived at 11am, registered and then went to the Pedriatric Surgery center since Mattie had to be sedated with a drug called Propofol (nicknamed Magic Milk since it looks like milk), which required an IV. Betsy Moran, a RN in the ward preped Mattie for his IV, and then we went up to the clinic (the Pedriatric Hematology/Oncology Center), to play and get the IV put in and some blood drawn.

The IV insertion did not go well, and Mattie was very upset by the whole process. Fortunately, although there was a huge backlog of MRI appointments and things were being delayed, Mattie was taken on time as he was considered a special patient. The MRI lasted 90 minutes, and when Pete and Vicki were called to greet Mattie as he came out of the anesthesia, we were also greeted by five members of the Hematology/Oncology Team who are assigned to us.

In attendance were Jennifer Rabin, RN, the Peds Nurse Manager (she manages the coordination of everyone), Kathy Myint-Hpu, CPNP, our Nurse Practioner who is on point for Mattie's health, Denise Garner, LICSW, LCSW, our Social Worker, and two of the full time Art Therapists, Jenny (a GW graduate) and Jessie, in addition to the Anesthesiologist, Dr. Natarajan, and Debbie the MRI Nurse who managed Mattie's MRI testing. Mattie had a tough time recovering since he was still doped-up and was disoriented, dizzy and sounded incoherent. After about an hour of crying, thrashing about, nose-blowing, a blue flavor-ice and modeling clay, the three of us left the hospital armed with Morphine, Codeine, an unlimited parking pass, and an armful of information.

Once home, Mattie took to our bed, watched several Scooby Doos on the Tivo, and within two hours was outside running around with JJ, an energetic and fun-loving three month old Jack Russell Terrier who belongs to JP de Andino, a trusted and incredibly caring neighbor.

Day Two

July 24, 2008 - After a sleepless night for Pete and Vicki (consisting of watching infomercials and playing gin rummy among other things), the three of us met with Bob and his Nurse practioner Ann Ressing, at the National Cancer Institute at Children's Hospital, where after more films and a lot of personal attention, Bob sat with the three of us and told and showed us what we were looking at in Mattie's arm. Later that day at 3pm, Pete, Vicki and Mattie met with Dr. Jeff Toretsky, a distinguished researcher and leading doctor of Pedriatric Hematology/Oncology Doctor at the Lombardi Cancer Center at the Georgetown University Hospital, who was not only astonished at how quickly we went from initial detection to sitting in front of him, but turned out to be a great doctor who was part of a wonderful practice at the Lombardi Center, led by Dr. Aziza Shad.

Day One

July 23, 2008 - Although Vicki's birthday was two days away, we were focused on Mattie's complaints of right arm pain after several weeks of tennis camp. We naturally thought Mattie's pain was related to the tennis, but when his range of motion started to be impaired, we went to his Pediatrician, Dr. Catherine Casey, to figure out what was going on with Mattie. After a quick x-ray, Vicki forced out of the Radiologist that it was a bone tumor.A few minutes after the appointment, Pete called Ann Henshaw (fellow Bostonian from Quincy and fellow Red Sox lover), and this sweet and selfless friend, said "Get your butt over here and let Bob look at the films." Bob Henshaw, her husband, who happens to be the Vice Chairman of Orthopedic Oncology at Children's Hospital among other things, took Pete and Ann upstairs to their bedroom computer to look at the x-rays. After viewing for 15 seconds, Bob went blank and said "this is bad." Bob then spent the rest of that evening and into the next morning making phone calls, calling in favors, setting up appointments and fast-tracking Mattie to be seen by the best specialists in this area.