Tuesday, March 31, 2009

Tuesday, March 31, 2009

Quote of the day: “You've done it before and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination." ~ Ralph Marsten

As I assumed, Mattie was in no mood to take the oral vistaril at 2am today. I woke him up to use the bathroom at that time but he refused to take the medication. I did stay up until 2am, because I felt compelled to see how Mattie was doing and to potentially try to give him his oral medication. Mattie was consistently up every two hours, and by the time Peter woke me up at 6:30am, I did not know what hit me. I sometimes wonder why hospital employees can't understand why I am so tired. I almost wish in a way I could videotape my life, because in so many ways it is hard to fathom what we deal with in one day. We deal with Mattie's non-stop care and treatment, but being six, we are also dealing with his constant need to play and inordinate amount of energy!

This morning, Mattie was exhausted and he stayed asleep until around 11am. When he woke up he looked like he was dazed and wiped out. He did eat his oatmeal, and then one of Linda's interns, Laura, came in to play a "worm" game with Mattie. Mattie greeted Tricia, one of his favorite HEM/ONC nurses, and had his vitals checked. Then he was off to the playroom. Once he left his room today, he never looked back. He had an extremely busy day.

While Mattie was sleeping this morning, I spoke to Tricia about the Vistaril shortage. She told me the residents would come and talk with me and they would have someone from pharmacy visit me. Well the seconds of waiting turned into minutes, and then an hour. I am certainly patient on many fronts, after all during check in days alone, I wait almost 10 hours for Mattie to begin chemotherapy. But with issues such as following up on medications and hospital personnel networking, I have very little patience. So I called Gail Chisholm, my patient advocate. She gave me the name and phone number of the head of pharmacy at the Hospital. To my surprise when I called Dr. Jeff Cox, he picked up the phone and took the time to talk with me. He heard my concern and was upset with the run around I was getting. He promised to investigate the situation with Vistaril, and would get back to me in two hours. Guess what? Not only did he call me back in two hours, but he went above and beyond the call of duty. He started calling around other local hospitals, and connected with the head of pharmacy at another hospital. He arranged for this other hospital to give Mattie five vials of IV Vistaril. But he wasn't taking a chance on the medication's delivery, and literally drove to the other hospital himself, picked up and secured the medication for Mattie. Here is another example of another outstanding department head at Georgetown Hospital. Dr. Cox is my hero for the day. He listened, understood, and his actions matched his words! Now if I could pick up the phone and get this Vistaril issue addressed in less than a day, it makes you wonder why Mattie's doctors could not? Should I as the parent have to take on this stress of securing medication? I think the answer should be no. I think what builds trust for me in Mattie's doctors is a level of commitment and advocacy for Mattie, and when I don't see it, I start questioning everything. If they can't advocate for medication, what else on earth aren't they advocating for? I wish I wasn't this suspicious but as a person who has studied human behavior for some time, I can't help but see a pattern developing.

This afternoon, Mattie played with Linda and Mary (a wonderful volunteer, who you may recall was involved in our strolling ABBA hallway performance last week). While Mattie was with them, I went to the HEM/ONC parent support group. It was an interesting session, and it is always enlightening to hear what others are dealing with and how their family is adjusting. That term, "new normal" was used in the session. A term that should be permanently removed from the cancer lexicon. There is NOTHING normal about your child having cancer and each time I hear this propaganda, I want to scream. I think this is a principle propagated by hospital personnel to force us into compliance or acceptance. I am not sure a parent can ever truly accept having a child with cancer, I frankly think it is more a process of adjustment. I also find attending a support group rather challenging. It is hard to step out of my need to help others and instead serve as a participant, but none the less through helping or listening, I find I do feel better.

When I reconvened with Mattie, I found he was playing with Brandon, Mattie's big buddy. Brandon had his three month scans today, and is doing very well, thank goodness. Mattie had a great time with Brandon. They played with model magic, and a submarine, which Linda gave Mattie. Brandon is coming back to the hospital to spend more time with Mattie on Wednesday, which will be lovely! Jey, Mattie's "big brother," also came to visit with Mattie, and they started talking about Mattie's birthday, snakes, roaches, and April fool's day! In fact, Jey joked about getting Mattie a roach farm for his birthday. I got a huge chuckle out of that notion! I enjoyed chatting with Brandon's mom and especially enjoyed her wonderful cookies she shared with us.

Later in the afternoon, Anna, Mattie's physical therapist, came by to work with Mattie. Meg joined us for our physical therapy adventure today, Mattie left the fifth floor and went to the PT gym! On our way off the fifth floor, I snapped some great pictures of Mattie standing and then knocking over a pyramid of cones.

Left: Mattie waiting patiently to knock over all the cones!

Right: Tricia (Mattie's HEM/ONC nurse) is in the background, and Anna is on the right hand side of the picture watching Mattie's progress. Mattie did a great job knocking all the cones down with his bionic leg.

When Mattie, Meg, Anna, and myself arrived at the PT gym, Mattie was very excited. He spent a great deal of time checking everything out. It was like a kid at a toy store. I wasn't sure what to make out of this, but Anna later told me she was thrilled to see Mattie's excitement for exploration. She said this was a very good and positive sign. After all, this is how children understand their world, through touching things, observing them, and incorporating them into play. I am happy she pointed this out to me. While in the gym, Mattie literally walked, rode a scooter and a swing, and attempted to climb a ladder (as you can see in the picture). You had to watch this process. Anna was holding Mattie, I was holding Mattie's IV line and Meg was holding the swing. We are quite a team. But one thing is for sure, Mattie was eager to try all the activities he once loved, and activities that would be typical for a six year old to partake in.

After therapy, Mattie and I came back upstairs, he was examined by the doctor, and then we went right back out into the playroom. We played a board game together, and even made up a story, with his newest and most disgusting character, Poop Man. Fortunately the story also had a character named Super Mattie, who saved the town from Poop Man.

Peter arrived after 7pm today, and he helped us back to the room. We had a nice dinner thanks to Gibby E. (Mattie's school librarian). Thank you Gibby for supporting us this week. After dinner, Mattie pulled out his leapster. A major first, but I think he needed some quiet time to unwind after a very busy day. Now Mattie and Peter are working on a lego project!

Recently I have come to learn that several osteosarcoma families across the country and in England are reading Mattie's blog. I am not sure why this surprised me. Maybe because I can barely handle my own story, my day to day existence, and therefore can only track a few other families that I know. For my own personal health, I feel that I have to protect myself right now. But other families do reach out on a daily basis and have the inner strength to hear and share their stories. It always pains me to hear how many other young people are dealing with osteosarcoma and each story is so different and profound. But there is one commonality. These children and their family members are courageous, inspiring, and committed to restoring health to their children. Unfortunately though, as I read more osteosarcoma stories, I realize not all the stories have a positive ending. I suppose this is a risk with any form of cancer, but osteosarcoma seems to be a particularly deadly disease. I have been particularly concerned about Mattie's pending lung surgery that will take place after his chemo ends in May. I had the good fortune to bump into Dr. Shad, the HEM/ONC director, tonight, and what I love about Dr. Shad is she has no reservation about picking up the phone and calling other doctors on our behalf. She called the head of thoracic surgery at Georgetown, and this doctor will be coming to see me tomorrow. She even told Dr. Shad that she would perform Mattie's surgery if Peter and I are comfortable with her doing so. Not to say that we will go with this surgeon, but I am happy to be consulting with a thoracic surgeon now to get a feeling for the extent of Mattie's upcoming surgery. God how much surgery can one six year old possibly have?

I would like to share a message I received from my friend Charlie. Charlie wrote, "I would title Monday's blog, "the revenge of Monday!" How frustrating to see that not only has nothing changed in the way the hospital does business like admissions but that a clearly foreseen problem with an identified solution has not been tackled. I am sure they would have ended up taking me off in restraints had I faced what you did yesterday. To allow a patient to go without needed medication when a source has been identified in sufficient time to make the transfer is negligence and malpractice on the part of the hospital and especially the pharmacy. Perhaps it is time to start using those words to the patient advocate and asking if they need the "intervention" of some publicity about the lack of support to patients. Frequently this "offer" will get things moving when being a compliant patient or parent will not. I was really hoping that this admission would start off on a positive note but it appears that was not to be. With the chemo not ending until 1:30 or 2, I expect that you had little or no sleep last night and I am sorry that happened. I hope Mattie wakes in a good mood, regardless and enjoys his day with the staff."

I end tonight's blog with a wonderful story that Charlie sent me today. Sometimes it is hard to understand why things happen, and I can assure you while going through this special kind of torture, I wonder what the life lesson really is.

Two traveling angels

Two traveling angels stopped to spend the night in the home of a wealthy family. The family was rude and refused to let the angels stay in the mansion's guest room. Instead the angels were given a small space in the cold basement. As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied, "Things aren't always what they seem." The next night the pair came to rest at the house of a very poor, but very hospitable farmer and his wife. After sharing what little food they had the couple let the angels sleep in their bed where they could have a good night's rest. When the sun came up the next morning the angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field. The younger angel was infuriated and asked the older angel how could you have let this happen? The first man had everything, yet you helped him, she accused. The second family had little but was willing to share everything, and you let the cow die. "Things aren't always what they seem," the older angel replied. "When we stayed in the basement of the mansion, I noticed there was gold stored in that hole in the wall. Since the owner was so obsessed with greed and unwilling to share his good fortune, I sealed the wall so he wouldn't find it.." "Then last night as we slept in the farmers bed, the angel of death came for his wife.. I gave him the cow instead. Things aren't always what they seem." Sometimes that is exactly what happens when things don't turn out the way they should. If you have faith, you just need to trust that every out come is always to your advantage. You just might not know it until some time later...