Sunday, August 30, 2009

Sunday, August 30, 2009


Tonight's featured Mattie creation is a piece of jewelry he created in the Lombardi Clinic. He designed it for me, and made sure he included cat, bird, and fish beads because he knows I love animals. You may also notice near the pendant (which looks like a crystal), there is a small bead that looks like a piece of dice. Mattie included the dice on my necklace for good luck.


Quote of the day: "The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new." ~ Rajneesh

Mattie did not fall asleep until 2am, and by that time, I had thoroughly had it. I stayed up with him and watched a TV show called, "Its Me or the Dog." Mattie and I get a kick out of these dog training shows, most likely for different reasons. Mattie loves watching the dogs and I love observing how the psychology of the owner's family dynamics impact a dog's behavior, and what I find fascinating is that without a doubt it becomes clear that pets always reflect back their owners' insecurities, anxieties, and feelings.

Mattie was back in his room last night, and I slept on the floor in his room. However, because I wasn't physically near Mattie while he was sleeping, he had many moments of sleeping talking and wake ups. It seemed like I was up every two hours, and by 9:30am, I couldn't take it anymore. Mattie was vomiting, complaining of pain, and I was wiped out. Peter came in to help me, and we settled Mattie back down, and then I headed to my room to sleep for a couple more hours, while Peter stayed in Mattie's room. What an existence!

Mattie woke up at 1pm, but remained on the couch and wanted to watch TV or videos. This daily routine upsets me tremendously. He refuses to take a walk, get fresh air, play, leave the couch, or interact with other people. Tonight I asked him if he wanted to go for a car ride, just to get out of the house and see the city lights. He started screaming at me over this suggestion. He told me his stomach hurt too much for him to move.

I had the opportunity to talk with Dr. Synder, Mattie's oncologist, today. Mattie's doctors are afraid that if we do not quickly address his constipation, he will develop a bowel obstruction. So I discussed our options. Mattie will head to the hospital on Tuesday and will undergo a digital disimpaction. In order to allow a stool to pass, a doctor or nurse inserts a lubricated, gloved finger and attempts to free up the hard stool. This approach usually gets most of the stool out of the way so that the rest can pass normally, providing much-needed relief. In addition to the digital disimpaction, Mattie will also be given an enema and an insuflon will be inserted into his right leg. An insuflon is a unique catheter system used for multiple daily injection therapy. Insuflon enables medication to be administered without repeated punctures of the skin, eliminating the pain and discomfort often associated with injections. However this catheter can only remain in Mattie's leg for 3-5 days, and then it needs to be replaced. Why the need for a catheter/insuflon? Because Mattie is on HIGH dosages of IV pain medication and anti-emetics, these drugs naturally produce constipation. Mattie isn't ingesting anything either, and his system is shutting down. We are beyond the point of oral laxatives or suppositories being useful. Therefore, every other day we will need to inject Methylnaltrexone into the catheter. Methylnaltrexone acts to reverse some of the side effects of opioid drugs such as constipation without affecting analgesia or precipitating withdrawals. I am told the drug works quickly and will bring relieve to Mattie. We shall see, because this is a lot to take on, on Tuesday. However, the ridiculous part to all of this is that insurance will NOT cover the cost of sedation for these procedures. I gather insurance companies feel that a seven year old who has been through hell and is dying and highly anxious should be able to sit still for a disimpaction, an enema, and the insertion of an insuflon. Got to love the thinking or LACK of thinking here! None the less, Peter and I have elected to do this with sedation, whether insurance covers it or not.


Mattie is also scheduled to return to the clinic on Thursday next week, to begin his IV infusion of Avastin, the chemotherapy I told you about last night, and hopefully he will also be able to consume VP-16. However, I am fully prepared to accept that this may not happen. Mattie's doctors seem to think that his intense stomach pains are caused in part by constipation, however, call it a mother's gut instinct, but I feel it is Mattie's cancer that is solely responsible for this intense pain.

Peter and I were dealing with Mattie's care and intense needs all day, and we did not get to eat something until around 4:30pm. By that point, we both felt ill. My parents sat with Mattie inside, while we ate on our deck. Mattie did not want us to leave his side, but it was leave his side or pass out. Mattie refused to acknowledge or talk to my parents, but at least I knew they were inside observing him if he needed help. Our days are long and heart breaking. I had a chance to chat with my parents today, which in my house is a rarity since conversation greatly annoys Mattie. But my mom talked to me about how Mattie's illness has affected her and how it has changed her perspective about her future. At this point in time, it is hard for me to see beyond Peter and I. Because to me, we are the ones most greatly impacted by the loss of Mattie, but I must acknowledge that Mattie has touched many lives, family and friends, and each of us is losing something by his death.

We would like to thank the Chiaramonte family for an amazing home cooked meal tonight. Thank you Liz for the Italian feast and for the Lego board game. Mattie was intrigued by this, and actually played it with Peter on the couch. Thank you for bringing a smile to his face tonight!


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Saturday's blog had so many reflections in it but the one I have to address first is the one that you spoke about with Ann. In my heart I believe, if you have borne and loved a child, you are a mom forever. It doesn't matter whether your child is with you physically or in spirit, once a mother, you never see the world quite the same way again. Even if you are not actively a part of Mattie's school or other mom communities, that doesn't change the person you have grown to be. Life will change, but that is the definition of life; as much as we would like to hold static, we cannot. However, the relationship you have with Mattie, the sacrifices you've made, the bonds you've created cannot be destroyed by death. If you feel it would help you to continue the blog after Mattie's death, you should do so. I know that I for one (as would many others, I'm sure) would be honored to continue to support you through your grief. What's happened this year has touched me so deeply and changed my life in so many ways. I believe I've grown as a counselor and a person as a result of bearing witness to your life since Mattie's diagnosis. I thank you for allowing me this sacred duty and I will be here as long as you wish to continue documenting this journey. I absolutely agree with you about the force of love and care giving in strengthening the physical and emotional health and well being of a person who is ill; I have seen the results on hospital monitors, even a newborn under stress in the ICU will show better vital signs when the baby's parents are there and can make physical contact. It is truly amazing to see. And yet, so often we discount the impact of that bond and the way we institutionalize hospital and nursing home facilities makes maintaining that bond ever more difficult. It certainly runs counter to everything I've learned or experienced first hand. I hope that some day we have the wisdom to change the way we care for others as well as finding ways to be more supportive to those who take on this herculean task."