Monday, May 4, 2009Quote of the day:
"If we could all hear one another's prayers, God might be relieved of some of his burden." ~ Ashleigh Brilliant
I would like to begin tonight's blog with a countdown...... it is 5 days until the March for a Mattie Miracle! We are humbled and grateful to all of the volunteers who are working so hard to make this happen. To them, I am forever grateful, and to all of you donating and registering for the walk, we sincerely appreciate your generosity and support!Peter stayed with Mattie last night so I could get an additional night of sleep. It is amazing how fast the morning time comes around and how long the actual day seems. Peter helped me get Mattie ready to head to clinic, which made the transition much smoother.
When my parents and I arrived at the clinic, Mattie met up with Jenny and immediately started a project. Soon there after he had his vitals and blood drawn. There is a new nurse in the clinic, because one of the full time nurses there is going on maternity leave. The new nurse's name is Roxanne. Mattie instantly liked Roxanne, because her name reminds him of his adopted sea turtle, Roxana. Mattie cooperated, and then was very happy to join Jenny and paint another ceiling tile for the clinic. This will be Mattie's fifth ceiling tile. As of now Mattie has painted a Scooby Doo tile, a huge cockroach tile, a Train tile, and a Rainbow tile. So what is featured on the fifth tile? A haunted house. Mattie requested that Jenny trace a house on the tile for him to paint. Mattie spent a good part of the day painting, he even recruited myself and Jessie to help him. The tile is almost completed, and we hope to finish it on Wednesday.
Mattie did several races around the clinic today with Jessie and myself, and each time of course Mattie won! I had the opportunity to chat with a couple of other families today which was nice. I also met another patient with osteosarcoma, and this patient completed his limb salvaging surgery about a month ago. Mattie came over to say hello to this teenage patient. Mattie had his blood drawn twice today, because his hemoglobin level was low and was in need of a transfusion. However, every five days Georgetown requires a type and cross (which determines compatibility between a patient's serum and donor red blood cells) blood test before Mattie can receive blood products. When Roxanne brought us back to a room to draw blood, Mattie started commenting about the painted patient tiles on the ceiling. I couldn't help but notice a tile that was painted by Cody in the room. Many of you remember that Cody was the six year old boy who recently died from Neuroblastoma. Seeing Cody's tile brought me great sadness. However, I am so happy it is there, because it serves as a reminder to all of us how fragile life is and more importantly that his presence will always be felt within the clinic.
Mattie then had to take oral premedications before he could receive MTP-PE. I tried convincing him to take this medication, but I wasn't being very successful. So Jenny came up with the plan of a prize. If Mattie took the oral medications, he could get a prize. He liked that idea, and complied with taking the medicine. However, when Jenny gave him a prize, it wasn't the prize he had in mind. Mattie became very ungrateful and difficult. He did not want to play with it, but continued to whine about the fact that it wasn't a Lego. I let this go on for a while, but then I felt the need to step in because he was being down right rude. He then began to cry, and eventually we talked this through. My mom redirected Mattie with something she brought for him, but before moving on, I had Mattie apologize to Jenny. Jenny handled it very well. Here is another example of the issues and difficulties of parenting a child with a life threatening illness. I could have caved in, because in the grand scheme of things, does it matter whether he pitches a fit about the prize he received? I certainly give him a lot of leeway on things, but being rude and ungrateful to others when they are trying to help and reward him is where I draw my limit.
Mattie played with a scientific illusions set my mom gave him. He played with it and had a good time, and then used some of the top like spinners in the set to create spin art with paint. It was very creative and I think his spinning results were beautiful. I took a picture of all these wonderfully colorful creations!
This afternoon, I had a conversation with Dr. Synder, Mattie's doctor. We discussed some questions I should ask the pediatric surgeon who we are meeting with at Children's Hospital tomorrow. In addition, I discussed with her Mattie's chemotherapy protocol. I have compared his current protocol to the clinical trial protocol he was on prior to surgery. You may recall Peter and I removed Mattie from this trial because we couldn't be assured that Mattie would be randomized to the appropriate arm of the study -- the one which would entail adding more powerful chemotherapy drugs. We felt since Mattie was a poor responder to the initial chemotherapy he was on prior to surgery, that we couldn't take any chances post surgery. We needed an aggressive treatment plan. So Mattie was removed from the clinical trial and placed on a standard protocol for metastatic cancer. Needless to say, I had some questions about the standard protocol, and I wanted to know why the clinical trial (which we removed Mattie from), had an additional three rounds of chemo associated with it. Yes I realize that is part of the hypothesis of the study to determine if this additional exposure of chemo will help with life expectancy, but if there were some strong indications that this would help Mattie, then I wanted to consider adding more chemo to his plan. Dr. Synder understood my question, but like I suspected, there is really no data out there to show that adding more chemotherapy on top of what he is already receiving will be beneficial. In fact, she couldn't even find substantial research out there to explain why the additional drugs and concentrations were added to the clinical trial. Basically after my conversation with Dr. Synder, I felt very frustrated. Not at her! But at the LACK of research for childhood cancers, but particularly for Osteosarcoma. Basically from my perspective, treatment for osteosarcoma is like a shot in the dark. There are some standard protocols, and that is fabulous if you are a good responder, but if you aren't a good responder, it almost seems like you proceed with caution and are on uncharted ground. Certainly you can sign up for a trial and other avant garde treatments, but MY GOD, we are living in the 21st century. We know how to deal with contagious diseases, we have wrapped our hands around the treatment of AIDS, and yet, we are in the pioneer days with Osteosarcoma. Not a good feeling if you should have a child with this horrendous disease.
I had my parents leave the hospital today, because it was going to be a marathon clinic day. Mattie was going to get MTP-PE and then head up to the PICU to receive a four hour blood transfusion (because by 5pm the clinic would be closing). Mattie received MTP-PE around 3pm (keep in mind we were at the clinic at 11:30am, it takes the pharmacy this long to get it together), and being true to form Mattie developed a reaction to MTP-PE almost an hour after the infusion. Meanwhile while he was developing a reaction, he also started his blood transfusion. Dr. Synder had the transfusion stopped, and got demerol for Mattie. Within minutes of receiving demerol, Mattie's rigors (intense chills and teeth chattering) stopped. He was crying and very upset. But I wasn't alone through all of this. Dr. Synder and Jenny stayed with me the whole time. Dr. Synder was in the room, remained calm and observed the whole reaction. When Mattie started to calm down, since the demerol was taking effect, he picked his head up from under the ton of blankets he was under, and asked me who was in the room. As he picked his head up, he said, "Dr. Synder is that you?" Then very seriously he said to her that he wanted her to sign his cast. You have to understand that Mattie refuses to let DOCTORS sign his cast. He told her that she took good care of him and really helped him today, which earned her the "treat" to sign his cast. By the time Mattie finished with her, Dr. Synder had tears in her eyes. Mattie has a way of getting to you! As she was signing his cast, he asked her if she was going to give him a kiss. Even in his stupor, the "kissing bandit" was at it again today! Take a look at the picture that was taken of us today.
Mattie, Vicki, and Dr. Synder! You can see Mattie can bearly keep his head up, but somehow Dr. Synder motivated him.
In addition to rigors, Mattie also developed a fever. Dr. Synder and I were chatting today because it was suspected that Mattie only would get a MTP reaction when his white blood cell count was low. But Mattie's absolute neutrophil count was 4500 today, which is high! So there is no rhythm or reason to when he receives a negative reaction. Which is why waiting two hours after an infusion is a safe thing to do. I asked Dr. Synder why Mattie sometimes has different negative MTP reactions. MTP is an experimental drug that is supposed to enhance the immune system. When the immune system is fighting pathogens, cytokines (Cytokines are proteins that are produced by cells. Cytokines interact with cells of the immune system in order to regulate the body's response to disease and infection.) signal immune cells such as T-cells and macrophages to travel to the site of infection. In addition, cytokines activate those cells, stimulating them to produce more cytokines. Dr. Synder feels that MTP activates different cytokines in Mattie, and some cytokines when released in the body produce fever, and others produce chills and rigors. Which would explain why sometimes he develops a fever, and other times rigors. Today Mattie had both! Needless to say, after this negative reaction, Mattie did not receive a blood transfusion today. Mattie will return to clinic on Wednesday for a blood draw and potential transfusion.
Peter picked Mattie and I up at clinic around 6pm. We got home at around 6:30pm, and tried to get Mattie to eat something, but his stomach just isn't interested in it. We want to thank Beth E. for another wonderful meal! Thank you Beth for the homemade meal and baked bread! I am dreading my dialogue with Mattie tonight for why he is seeing a surgeon at Children's hospital tomorrow. I am debating about how much to tell Mattie, but hopefully Peter and I will figure this out. We have a bright and early appointment with the surgeon at 9:30am, and then we head over to see Dr. Bob to get the cast REMOVED!
I would like to share a message I received today from my friend Charlie. Charlie wrote, "It is always nice to read about Mattie having the opportunity to spend time with his friends; like all of us, we gain so much from the company of our peers. How wonderful that he and Charlotte can pick up where they left off without worrying about what has occurred in the interim. How much healthier our adult relationships would be if we could do that. I have to say I love the "kissing bandit;" what a great alter ego for "super Mattie" to have. Once again I am struck by how little is actually in the control of parents who are naturally responsible for their child. The when and how of admissions, medications, daily routines in the hospital all are set up for the convenience or documentation of the medical staff or the insurance company regardless of the impact on the patient or their family. Now due to the billing process, a parent cannot even decide how and when to share medical information with their child because the child has to be dragged along on an appointment so that the insurance company will pay the doctor what he or she wants to bill. This is ethically irresponsible in my opinion. I know that you and Pete will find the right time and words to explain this to Mattie, like you, I wish you had more time to prepare him. I hope it goes well."
I would like to end tonight's posting with a commentary I copied off of Kristi's blog. Kristi is a fellow osteosarcoma parent and her posting today caught my attention. It is in NO way to downplay the Swine Flu and those affected by it, but it is to point to a critical problem in our country. The lack of focus, attention, and funding to childhood cancer research and treatment.
The Swine Flu: A Crisis by Kyle Alfriend, a member of PAC2 (People Against Childhood Cancer)
It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly.
Here is what has happened already:*Over 100 schools have closed.
*President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."
*Congress approved $1.5 billion in emergency funds.
*Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."
*The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.
*WHO Director-General Margaret Chan has raised the alert level to phase 4.
*Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.
*Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."
*Congress has asked Homeland Security to consider closing the Mexican border.
Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues. Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.
This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. So please understand what I am about to say. I in no way wish to belittle those who have suffered from the swine flu. I would just like to point out some comparisons.
1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.
2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently refers to the 40,000 children currently with cancer, and the 2,500 annual deaths, as "very rare."
3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.
4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. And again and again and again. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.
5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.
6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer receives a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer.
So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none.
Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 billion for the flu has been paid. The $30 million for childhood cancer was approved, but has never funded. Other issues of greater importance keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package).
I am not criticizing the response to the Swine Flu. It fact, I believe it is an appropriate response. I just do not understand why our children with cancer deserve less.
Please remember:1 in 300 children will be diagnosed with cancer before the age of 20.12,600 children are diagnosed each year. 3,000 will die of cancer each year.
Cancer is the #1 disease killer of children ages 1-19.
The cause of most childhood cancers is still unknown.
Only 3% of cancer research money goes toward childhood cancers.
There are currently 30,000-40,000 children fighting cancer in the U.S. The number of children diagnosed with cancer has increased every year for the past 25 years.
Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.
In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.
Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers. For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."
Peter drove to the Walk ahead of time to try to help folks with the set up. When Mattie arrived, he met a preschool classmate in the parking lot and we walked into the event together. When we arrived, around 100 people were already there. To make a long story short, we estimate that there were around 500 people in attendance today. This was a walk that far exceeded our expectations. We want to sincerely thank Liz Chiaramonte, Walk Chair, Ann Henshaw (Team Mattie Coordinator), and Alison McSlarrow (Team Mattie Media and Communications Coordinator) for their incredible efforts. I realize these ladies haven't had much sleep all this week! We also acknowledge all the amazing volunteers and planning committee members for their hard work. I think what was abundantly evident is that our communities united today to support Mattie and my family. What an amazing gift to receive.
Whitney and Lesley (Linda's former childlife interns) attended the walk today. As many of you know, Whitney has and continues to work for us now on weekends, since she started her full time job. It was wonderful to have their support today!
Right: The crowd seated in the stands while our program was under way. We were fortunate enough to have Rev. Jim Greenfield deliver a prayer, Joan Holden (Head of Mattie's school), Dr. Shad (director of the HEM/ONC practice at Georgetown) and Dr. Bob (Mattie's surgeon) deliver a greeting. 
Right: Everyone walking around the track in honor of Mattie. It was a very powerful force to observe. Mattie had a great time, doing wheelchair races and we can't thank Coach Dave, Robbie, and Brandon for doing numerous laps with Mattie. He LOVED IT!
Mattie had a wonderful visit this morning from Jenny and Jessie. They admired his Haunted House tile and helped us sketch a roller coaster scene on Mattie's sixth ceiling tile. They even helped Mattie begin to color in the tile, but once they left, Mattie got upset and we had to put the paints away. Mattie at times gets frustrated with his perceived lack of physical abilities, and when this happens, it is hard to rationalize with him. So I find the need to reset and play with something else.
