Monday, March 16, 2009

Monday, March 16, 2009

As we approach St. Patrick's day, I share an Irish Blessing with you (thanks Charlie)!

May the good saints protect you,cAnd bless you today. And may troubles ignore you, Each step of the way. May God grant you always...A sunbeam to warm you, A moonbeam to charm you, A sheltering angel, so nothing can harm you.


As many of you know thursday is another big day for Mattie. Mattie will be getting bone scans (to determine if any other tumors are popping up in his bones), and several CT scans (to monitor the lesions in his lungs, and to examine all four of his surgerical sites). Though this is several days away, I began focusing upon this on sunday night. Never a good thing, because what I landed up accomplishing was that I couldn't fall asleep. I finally went to bed at 4am. Needless to say I wasn't functioning very well today. For those of you who pray for Mattie, I ask you to think about Mattie at 10am and 11am on thursday when the scans will be taking place. May God hear our prayers.

Mattie had a good night of sleep, other than being up every two hours to use the bathroom. When Mattie woke up this morning, I administered GCSF (white blood cell growth factor) to him, and there after, Peter's parents arrived. We got Mattie cleaned up, dressed, and headed to the Lombardi Clinic. We spent a record amount of time in the clinic today. We were there from 11:30am until 6:30pm! Wow! I was wiped out after this immensely LONG day. Thankfully Jessie and Linda tag teamed and helped with Mattie. I think Peter's parents enjoyed meeting our hospital family and got a better feeling for what the clinic was about. Mattie created another box project, played with model magic, and painted. Mattie was having another great play scenario with Jessie today (which started out with his made up character, Pinky), but to be honest, I was focused on my own art project addressing "What a hospital should be'" that I tuned in an out of their story line. Of course that can also happen when I am tired and I just can't co-process what is happening around me. Jessie is truly delightful, and has a wonderful way with Mattie. Jessie is also great at making up different characters and voices, and she is thoroughly entertaining to listen to! I will never forget the smile Jessie brought to my face one day when she visited Mattie in the PICU after one of his surgeries. Mattie was in a bad way, and Jessie brought the room to life with several made up characters. Some things I will never forget!

At around lunch time, we had a visit from Laurie D. (a SSSAS mom!). Laurie brought lunch for all of us, including Peter's parents. It was a very generous and delicious lunch, and I am happy to report that Mattie ate a significant amount of his happy meal! Thank you Laurie for the wonderful book fair gifts too. All of them were new to Mattie. He did the fish puzzle several times in the clinic, he started painting the car piggybank, and even loved the train card game. All the gifts were a hit, and the food and goodies were a hit with all of us. Thank you for your incredible support, it is so appreciated. You helped us through a day that never seemed to end.

Jessie had a special delivery of a lego playtable, which was donated to the clinic today. However, the table came unassembled. So Peter's dad, mom, Mattie, and Linda worked on putting this table together. Mattie was right in there helping with the allen wrench and screwdriver. Mattie was determined to get the project done, and he was very patient and diligent! Linda played with Mattie for several hours today, and we so appreciate her coming down from the PICU to be with us. I honestly don't know where I would be without Linda, Jenny, and Jessie. Luckily I don't need to find out. Life is hard enough without this thought.

As the afternoon wore on, and Mattie's blood results came back, I realized he would need a blood transfusion. Mattie's hemoglobin level was very low, which would explain why as the day wore on, he started to look very pale and was getting worn out. Mattie handled his MTP-PE infusion very well. The infusion took about an hour, and there after, he had a blood transfusion which took three hours. During the infusion, Dr. Synder examined Mattie. But Mattie was getting agitated and did not want to comply with the exam. Dr. Synder understands Mattie's personality, and told him she would come back in a little while. During that time, Mattie fell asleep in my lap and Linda helped me transition Mattie to a bed, where he rested for over an hour. While Mattie was sleeping, I called Dr. Synder back in so she could examine Mattie, which worked out well. Dr. Synder spoke to me several times today. I discussed with her my level of stress and fear about thursday. I also told her about my pending fear about the end of Mattie's treatment in May. I told her that I can imagine when I tell others that I am apprehensive about May, they may not understand the sentiments behind these feelings. But she assured me that most parents who have children with cancer have this intense fear once treatment stops as well, because once treatment stops nothing is actively fighting off the cancer. The only difference between these other parents and myself is I am thinking months ahead (since I started with this reasoning in February) of the actual end date. Dr. Synder, knowing me and my professional background, did not find this fore thought unusual, and in fact, she thought it was very healthy. It takes me a while to process these fears, and I figure the sooner I deal with them, the better I will be in the long run.

At around 6pm, Mattie's blood transfusion was complete. But it was at that point that he sneezed, and with that came out lots of blood. So the nurse called Dr. Synder back to examine the discharge. Dr. Synder and I discussed back and forth what to do, and she gave us the choice of either staying a few more hours for a platelet transfusion (to help clot Mattie's blood, since his platelet count is declining), or we could go home and if the bleeding continued we would come back to the hospital. After spending seven hours in the hospital already, we elected to go home, and so far, Mattie is doing fine and has a good amount of energy.

We want to thank the Tilch family for a wonderful dinner and for their support. Mattie loved the pasta and Peter and I loved the salads and tasty treats. I so appreciate all of you who keep me going on chocolate! As I write this blog, Peter and Mattie and painting the rest of the piggy bank that Laurie gave Mattie! I think you will be happy to know that Mattie's shamrock sunglasses, necklace, and headband were a huge hit in the clinic today!

As I sign off for the night, I would like to share an e-mail my friend Charlie sent me. Charlie wrote, "It was lovely to read about Mattie's day and how much progress he's made. We are all celebrating the return of his good disposition and his enjoyment of life. I loved the picture of Mattie all dressed for St Patrick's Day and the trip to the restaurant. Sometimes things can seem almost normal and then I remember that there are still trips to the hospital ahead of you. I hope they are as uneventful as possible."