Tuesday, April 7, 2009

Tuesday, April 7, 2009

Quote of the day: "Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience." ~ Anonymous

I find it particularly interesting that Mattie is very clingy with us while we are home this week. His need for attention waxes and wanes (like any child), but a week or so ago, I noticed that Mattie is uncomfortable being at home without someone in the room with him. This level of intensity along with an already intense situation makes for a tiring and stressful combination. We haven't discussed Mattie's pending surgery with him yet, and I do not look forward to this discussion, because I know this will be met with a lot of fears and frustration.

Before I could take Mattie to Washington Hospital Center today, I had several nursing tasks to perform. I had to disconnect Mattie from his nighttime IV hydration, flush Mattie's central lines, administer IV kytril (an anti-emetic), and finally, infuse GCSF (a white blood cell growth factor) through Mattie's central line. By the time all of this was done, I felt like I already put in a full morning. Then I had to get Mattie dressed and somewhat prepared for his meeting with Dr. Bob. Ann was going to meet me at the hospital today and help me with Mattie, but she wasn't feeling well, so Ann sent Tanja in her place. Tanja met me in Dr. Bob's waiting area at Washington Hospital Center. The hospital was busy today, and we waited in the area for about an hour. Tanja came with her bag of tricks, and also gave Mattie two wonderful Easter baskets that the Canterbury's created for Mattie. Mattie went to preschool with Sara Catherine Canterbury, and it was so lovely for Mattie to have these special and thoughtful distractions today. Mattie loved all his basket items, and is very excited to grow "sea monkeys." We started the process tonight. If we actually get these creatures to live a few days, I will take a picture of them and try to describe what they are in case you are not aware of them. Mattie also loved the beautiful Easter cookies that Sara Catherine made with her mom.

Tanja brought touchable bubbles to the hospital today, and not only did Mattie love them, but even the adult patients got a kick out of the bubbles. I think seeing bubbles brings a smile to any one's face! It was a joy to see this, and I especially loved these distractions, because several patients in the waiting room were watching a very lude daytime talk show. I turned Mattie away from the TV, and if I had my typical level of energy (which I don't), I would have challenged several patients on their viewing pleasure especially when there are younger minds and ears present in the waiting area. Tanja also brought Mattie some wonderful bug samples, that had been preserved in blocks of glass. Mattie got to examine these bugs with a magnifying glass and also learn some facts about the bugs. This is a wonderful gift for Mattie. Needless to say, Tanja really helped to entertain and engage Mattie until Dr. Bob could see him.

Dr. Bob met Mattie in the waiting area and took us back to a room. He told Mattie that he would have him lie down on his tummy for a while, so that gravity could help straighten out his right leg by the knee. When I heard this, my first reaction was, "this should be interesting." Mattie has NEVER liked being on his tummy, not as a baby, toddler, or child. It is a position that brings him great discomfort. Mattie was brave enough to put up with this position for a few minutes, so as to not disappoint Bob, but when Bob left the room for about 30 minutes (for gravity and my leg massage to do its work), Mattie proceeded to become highly agitated. Mattie began to cry and said that he had to roll over and sit up. There was NO rationalizing with him. After all it is hard to rationalize with someone who is very scared and anxious.

So while Bob was out of the room, I helped Mattie sit back up. I continued to massage his leg, but I figured if I did not comfort Mattie, there was NO way on earth a cast was going on his leg today. With Mattie you can easily get to the point of no return, and I had to cut that off before we got there. While I was doing this, Tanja was practically doing a song and a dance to try to distract Mattie and take his mind off of what he was doing. It wasn't an easy process. I even told Mattie a funny story about how Peter asked our obstetrician what type of belly button (innie or outtie) Mattie would have after he was born. I still remember Peter asking the doctor this question with a straight face. Any case, Mattie was fascinated by this line of trivia, but it did not last long. Tanja pulled out martian mud, a gooey substance that reminds me of gak. As the minutes went on, I then convinced Mattie to get back on his stomach. I told him that he should get back on his stomach, and if he did Dr. Bob would never have known that he wasn't on his tummy the whole time. This seemed to catch Mattie's attention. He then complied and got back on his tummy! Whatever it took!

When Bob came back into the room, I could tell Mattie wasn't happy with the process. He kept saying he wanted the process to be done, and he wanted to go. As the casting got under way, Mattie was screaming out for his wheelchair, which was in the hallway. Mattie did not want the wheelchair per se, but the comfort of what the wheelchair provided, an escape plan out of the casting room. Mattie was not only agitated for the casting, but I would say he was having a full blown anxiety episode. There was a real look of panic in his eyes, and he was kicking his legs and wanted off the table. Tanja snapped a picture of us before the real panic unfolded. I do want to comment, that the necklace I am wearing (which you can't really see) was made by Mattie. He made it in clinic yesterday with Deborah, the bead lady, and it is simply priceless to me. How Bob was able to cast Mattie's leg is beyond me. Between the kicking and screaming, I would have given up, but Bob is grace under pressure. Or a man on a mission. He got the mission accomplished.

I wish I could say once the casting was over things improved, but they did not. Tanja helped and loaded us into our car, and I was ready to start the car, when Mattie broke out in tears. So I shut the car off, and jumped into the back seat. After he calmed down, he fell asleep. In fact, when I got home, I stayed in the car garage for 30 minutes to let him nap some more. But Mattie has been edgy and agitated all day. He hasn't given Peter and I a minute's peace tonight. He goes from crying to anxious in two seconds. He wanted IV pain medication tonight, but of course that isn't happening. It is hard enough for an adult to understand and accept the discomfort of having a leg in a cast, but a seven year old who needs to move and bend his knee, this is quite another story. It has been virtually impossible to do anything tonight and several times Peter and I have landed up yelling at each other because the situation is so reminiscent of the fall. Where we felt hopeless and helpless. During my last attempt, I sat next to Mattie and rationalized why this cast is so necessary. He says he doesn't care whether he ever walks again, but I know that is not how he really feels. This is just fear talking. You can throw all the medicine you want to at Mattie but unless we work through some of the underlying issues, the medicine will get us only so far.

We want to thank the Kane family for a lovely dinner tonight. The cupcakes are helping me through the night, and I can see it is going to be a long one. We all enjoyed your homemade lasagna. Thank you for the continued support.

Peter and I signed Mattie's cast tonight, and we are trying to lighten the mood, but it is hard. Check out how Peter and I have signed the cast.

Left: Peter's signature line to Mattie is "I love you" and my signature line to Mattie is "You are my sunshine."

Right: Peter also wrote, "Mama Lover" on Mattie's cast, because Peter jokes that we are super close to each other. Mattie and I were close before cancer, but cancer has only solidified this bond.

I remember reading another blog maintained by a fellow osteo mom who I have befriended. Kristi wrote that osteo parents are living "hell on earth." I couldn't have said it better myself. As I was driving through the city today, I saw people jumping in and out of government buildings and museums and all I could think is I used to be just like this. Clueless and happy. Clueless, because I did not realize how in an instant sickness could strike down a family in its tracks and with it take away a future, happiness, and perspective. That may sound harsh, and perhaps one should be more optimistic, and I am at times, but this is the sad reality of living with osteosarcoma. The world as I know it, is gone. It will never and can never be the same, and I am envious of others who don't have to spend their days in hospitals and with the intense fear of losing a child.

Mattie's meltdowns are so numerous tonight, I have lost track of the number we are on now. This last one was over the fact that we were out of golden oreos. Mattie's friends who are coming over tomorrow to help me, are taking care of this need, but wow! Of course I keep reminding myself it is not about the oreos really, but none the less, when you are frantically trying to calm your child down, if oreos are going to help, rest assure I am going to get oreos.

I would like to end tonight's blog with a message from my friend Charlie. Charlie wrote, "Another exhausting day in the hospital. And to know that it has to be done again and again so that Mattie will make it to the other side and regain his strength and health. I marvel at your strength and endurance and I know there really is no other choice but that doesn't lessen the achievement in my view. I am sorry that you will have yet another hurdle with Mattie's cast to deal with but hopefully it will resolve the problem and the results will be well worth the trouble. I can already visualize Mattie decorating the cast with rainbows and roaches; should be an interesting dichotomy. I hope your day at Washington Hospital Center is not too taxing and that you get to relax a little at some point."