Thursday, December 11, 2008

Thursday, December 11, 2008

Wednesday wasn't a good night to say the least. Mattie was up every hour on the hour. He was complaining of stomach pains, headaches, had a fever, and also spent a lot of time whimpering. It was a tiring night on top of hundreds of other tiring nights. How Peter and I function during the day is beyond my comprehension, because I think we are pushing our bodies beyond what is humanly possible to handle.

When I tell you today was a blur, I am not kidding. I have lost all concept of time. Why wouldn't I? Since every minute of my day is performing the exact same role. Mattie had a visit from Dr. Toretsky et al. (the et al. are the residents, and one of his students) this morning. For a child with anxiety seeing all of these people entering his room is hard to handle. Mattie started screaming when the doctor first came in, and so Dr. Toretsky left the room and tried again later. We spent the day battling 102 fevers, trying to push down tylenol every four hours (which takes an inordinate amount of energy and patience on my behalf, since Mattie is VERY non compliant with oral meds, and to top it off, all his sensory issues are heightened. So smells and tastes that wouldn't bother you or I, send Mattie right over the edge), and then we had to contend with a four hour long blood transfusion. Mattie needed the transfusion since he was anemic and his hemoglobin level was low. While this was happening, Mattie had to get his temperature and blood pressure checked every 15 minutes initially and then every 30 minutes to make sure he wasn't getting a bad reaction from the transfusion. For a child who doesn't like having people coming into his room and being touched, I bet you can figure out what kind of day this was! Thankfully we had Sarah Marshall today, who lived through Mattie's situation in full last week, and she is very calm and collected which helps a stressful situation.

This afternoon, Mattie did take a nap at around 12:30pm, which gave me the opportunity to meet with Mattie's psychiatrist. I told him what I have been observing and experiencing with Mattie, and he too believes Mattie is dealing with medical trauma. We talked about how to transition Mattie from anxiety meds to medications given for trauma, as well as a medication to help him sleep at night. Sleeping to me is key here. Mattie (and us) haven't had a decent night of sleep in a long time. I think Mattie needs to be reset so that he can have a peaceful night of sleep and right now his nervous system is in hyperalert mode at night. So I feel we have a plan, but it won't be easy to implement. The doctor could see I am wiped out, with not much else to give, and if Peter and I don't get a break, this won't do anyone any good. So he wants to work with me on helping Mattie eventually accept that I need time during the day to myself, time where he can be with someone else, and reengage with the outside world. Right now, Mattie is very closed, shut off, and avoids contact with others at all costs. It is very painful to see him refuse to talk with even people he knows and loves.

Mattie had a visit from Linda today who brought him all sorts of knex to build with. Below you will see some of the pictures I captured of Mattie's creations. The picture with Mattie in it, illustrates his knex fish and fishing pole he created with me!

Mattie also had a visit from Laura today. Laura is a flutist and she happens to be Dr. Toretsky's daughter's teacher. Dr. Torestsky asked Laura to stop by Mattie's room to play for him. During that time, I went to get something to eat while Linda was with Mattie and Laura. But Linda called me to let me know that Mattie was starting to get very anxious without me there, so I quickly headed back and got to meet Laura myself. Sometimes I wonder what is worse, never leaving the room, or leaving and then worrying when Mattie will meltdown and I will have to run back. The flutist's visit was a very nice gesture on Dr. Toretsky's part. I wish Mattie enjoyed this visit more, but I could tell when I got back in the room, Mattie was on hyperalert mood, and could have seriously melted down if I was gone one more minute.

In addition to dealing with the transfusion today, I also learned that Mattie's levels of calcium, phosphorus, sodium, and potassium were low. This was one of the potential side effects of Ifosamide, and therefore Mattie will need to go on supplements for quite some time to regulate out his levels. All fantastic news to a parent who has to do a song and dance for Mattie to take oral medications. There are times during the day when I say to myself, "you got to be kidding me!?" of as my in home nurse would say, "WTF?!" How much more can a person take?! Apparently a lot more, and as Peter reminds me, it most likely will get worse before better. Peter sums up our life now as "a miserable existence." That may sound depressing, but guess what? All of this is depressing, and if we weren't feeling any of this, I would say something was deeply and profoundly wrong with us.

At around 5pm, Mattie had a visit from Carrie and Emily. Carrie is my teaching assistant at GW, and she is also a professional counselor with years of experience working with children who have experienced trauma. Emily is a play therapist by training, and together they both came to try to engage and play with Mattie. Both Carrie and Emily were good sports. They really tried by bringing a vanilla shake and play doh, but Mattie couldn't tolerate them in his room at all. In fact, he worked himself up so, that they couldn't stay more than 10 minutes. After they left, he was screaming that he had a stomach pain and then threw up. He was demanding the antacid they have been giving him in his central line. But Dr. Toretsky did not want Mattie to have it today, since he is already on so much stuff. So Dr. Toretsky asked for my permission to give Mattie a placebo (just plain saline solution) instead of the medication. Because I felt that Mattie's stomach ache happened right after his anxiety of having visitors, I did see the need to try just regular saline solution, to see if the thought of receiving a drug calmed him down. It did indeed. He fell asleep, after his tirade.

There is something so desperate and sad about our situation. I think Mattie's doctors are trying their best to help us, and Dr. Toretsky could see I was simply worn out today, and so he gave me a hug. He said sometimes that is the best medicine. I can tell you the best medicine would be if you pinched me and told me this was a bad five month nightmare. The days are VERY long. Picture a day where you can't leave the room, where you are caring for someone morning to night, where there is so much uncertainty about the situation and what the future holds, where you see no one, talk to no one most of the day, never a minute to yourself, and bearly have time to eat. This is a brief synopsis of my day. But the day doesn't end early, it goes until 1am each day, and then even then, the night doesn't come without issues. At this point something has to give, I am open to working with Mattie's psychiatrist to figure out a plan.

I received two lovely e-mails today. The first one is from Grace, an RCC mom and friend. Grace wrote, "I'm always a few days behind in responding, but please know that I've been by your side experiencing each moment and praying for good news. In fact, at the recent prayer service for Mattie, I spoke with many people about their experience in following your blog. Some curse at the computer, some cry, some e-mail each other or pick up the phone to commiserate, and some further mobilize forces. We are all riding this roller coaster with you.We were all collectively devastated when we learned about the lung scan. But I have to say, my first reaction was "it's always darkest before dawn." My thoughts keep returning to the stories of hope that Emma's mom and the Canadian boy's mom provide. It very much seems like scans of the lungs are an imperfect science. I cling to the hope that the lung lesions will disappear as they did with the Canadian boy and that they can't be found again as happened with Emma.I also must add, that when I came to see you recently, I was so moved by how incredibly patient and loving you were with Mattie. You are truly a gift; I know of no other person who could be so calm and soothing as you were with Mattie while he continually pined for Peter. Even in your utter exhaustion, after months of dealing with difficult behavior, you somehow still manage to be incredibly fresh with your patience and care. Most parents exhaust this ability after a few, short minutes of dealing with a standard, run-of-the-mill temper tantrum. You are to be truly commended in your extrodinary ability to provide an unflappable calming, comforting presence for Mattie. Your presence rivals any benefit modern medicine could ever provide. When I met Whitney, she echoed these sentiments by saying that she had never seen such dedication from any parents she had ever dealt with. It was lovely to meet and talk with her. What a kind, caring soul she is. I was so heartened to see how truly dedicated she is to Mattie. Even her extended family is invested in Mattie and pulling for you. I'm so grateful to know that you are surrounded by such a caring, capable medical staff. There are so many people pulling and praying for Mattie. That has to make a difference. I know you have probably heard from a lot of the “team” that attended Monday’s Prayer Service – but I just wanted to re-iterate what a wonderful service it was – and WOW! I feel honored to be a part of such a wonderful team. One thing is for sure – this is a group of determined and committed folks – that are here with you for the long haul and will NEVER give up fighting for you, Peter and sweet Mattie."

The second e-mail is from Carolyn, an RCC mom and friend. Carolyn wrote, "As I read your blog daily, my constant thought is WTF!!! I also have continued to believe that God never gives us more than we can handle – in fact, it is that thought that has gotten me through several rough patches in my life – but I continue to wonder if God believes that you, Peter and Mattie have herculean strength (physically, emotionally and spiritually). Enough is enough! So I will continue to pray for some respite from your living hell and mercy for you all. Just remember – you are an AMAZING mother and woman! You have done everything right – and don’t let anyone tell you otherwise. A mother’s intuition is far more “knowing” than any doctor, nurse, therapist, technician could ever be."

I want to thank the Goff Glennon family tonight for a lovely dinner and for stopping by to visit. Typically I try to keep other children away from Mattie when he is severely neutropenic, but Mattie caught a glimpse of Sam through his door, and waved at him. So I did let Sam and Ashley (Sam's mom) into the room. Mattie spent a few minutes with Sam, but then Mattie shut down and Sam understood that he had to leave. There are times all of this is just too much for me. A six year old shouldn't have cancer, shouldn't be so weak, cut up and scarred, unable to play, go to school, have fun, and be innocent and carefree. Tonight I was talking to Tricia, one of Mattie's nurses, and she was telling me about her son's upcoming 16th birthday. For some reason this brought great sadness to me because I thought that this may not be an opportunity I have with Mattie. Certainly you can't think like this, but when you live with cancer and it affects your family, you can't help but think like this. It is a disease that affects the family system, and it is an equal opportunity killer. What I mean by that is it attacks the family's body, mind, and spirit.