Tuesday, October 20, 2009

R.I.P. Papaw Doyle

The weekend was a whirlwind of activity for us. Some wonderful things happened that I totally planned on blogging about, however, I felt it more necessary to spend my time talking about Papaw Doyle.

We arrived home from our adventures on Saturday night, and Steve retrieved the kids from Granny and Pop's early Sunday morning. I called my mom, who had expressed a desire to see the kids on Sunday but got no answer. When I was able to reach her she said that Papaw was doing badly, and was in the SICU at Hamilton Medical center. Just from the information that I had gleaned in the past few days from Mamaw and others, I knew that he must be close to the end. I said I'd come up there, and left Steve with the boys for a short trip to the hospital.

As soon as I got there I was greeted by several family members and told to go on back to his room, as visiting hours were about to end. I steeled myself, conjuring up the image of my maternal grandmother, when I had visited her in the same SICU, shortly before her death, and tried to prepare myself. It didn't work. I asked Mamaw if Papaw could hear me. She said, "Of course!" and leaned close to him and said "Jessica is here." Although he looked like a burn victim due to a bad rash that was being treated, and his eyes looked like tiny little pig-eyes when they opened, he reached a strong hand towards me and wanted to clutch my arm, which he did with amazing strength and said "I love you.. I love you, you know that don't you?" After that he moaned a bit and showed obvious pain. His body looked like some insignificant bumps under the sheets, he was barely there. I wasn't prepared for how this would effect me and I just stood there stunned, nauseated, and I wanted to run from the room, but I didn't. I stood there looking like I didn't care, my best defense. A cousin of mine, just a few years younger than me, entered the room at that point. Papaw all but leaped from the bed to hug her when she came in. His strength those few hours before he died was intense. The effort left him moaning, and I had to sit down.. peeking at him from underneath the IV bags. He said to mamaw, through the oxygen mask "How much longer do I got, this is bad, its too hard on me." I watched him try to kiss Mamaw through the mask every time she got near enough for him to do so. I couldn't stay much longer, told everyone that I loved them then went to the waiting room.

Stuff happened after that. I sneaked in one of Papaw's sweet good friends so that she could see him after visiting hours and then hugged her while she cried because she saw him. I talked to family, I told stories that weren't relevant to anything, and we all giggled about some stories about cremation. I didn't want to leave Mamaw, but she was behind closed doors and I needed to get back to my children who I had hardly seen all weekend.

Manny isn't sleeping anymore, but I feel kind of stupid complaining about that.. so lets just say that I got about 2 hours of sleep that night between thinking and parenting. I was laying in bed when mom called and left a message that papaw had died about 11 PM, about 8 hours after I left the hospital. I talked to her a bit then slept. I called mamaw and dad a few times over the next few days and tonight we went to visitation.

I opted to bring my children to visitation. I know that death is handled REALLY differently in different regions of the USA. But I have been to a lot of southern open casket visitations and I had an idea about how my children would react. Jake was thrilled to see all of his grandparents in one place. Pops and Granny went with us. He ran up to Mamaw. I wasn't really expecting what came next as he tried to jump on tiptoes to see what was inside the casket. He saw Papaw and his expression changed a bit, then he decided he would go sit with my mom instead. That was all. Manny also saw Papaw's body and waved at him. I had similar experiences as a child, and I think that this is healthy. Others might disagree, but.. well.. we do the best we can.

Is Death worse than Birth in America? Most people know that I am a birth advocate, and believe that birth is natural and that we shouldn't be tortured, frightened and otherwise poked and prodded during birth (dont' get me started). Equally, I believe that death is another part of life that is similar to death in that.. it can be painful, it is scary, you want your loved ones near you (or not), it is private, it deserves respect and, once it is over, the pain goes away and you are left with bliss. These two parts of "life" are so similar. Why is it that, in this society, we remove the loved ones and the comfort and support from this part of life.. just so that nobody feels discomfort, except for the person dying? I was once told that I shouldn't talk about my childrens' issues because it made others uncomfortable. Does that mean that we shouldn't hold the hands of the dying and of the ones giving life because it makes everyone else uncomfortable? Rubbish. It is VERY hard, and I didn't do as good of a job as I wish I could have holding Papaw's hand.. but I tried.. and I will think on it for the rest of my life. Once upon a time women gathered around a woman during her birth and did everything they could to ease her through transition, and once upon a time EVERYONE gathered around a dying man and hugged and kissed and eased him into the great beyond. I think that everyone did the best that they could to do that for Papaw.

Papaw's funeral is tomorrow. Steve will watch the kids while I go. I'm fine, by the way, and we don't need anything. Papaw is at peace and Mamaw's life will begin a new chapter, I think. She is healthy and full of energy and will find a way to help others in a way that will leave the rest of us in awe, I am sure.

Steve has a notion that people start to worry about their "legacy" when they get older and what sort of memories they leave behind. I can understand this, especially since I don't believe in an afterlife, that our rewards ARE here on earth, and that the only thing we leave behind is who we were and the impression we made on people. Papaw has nothing to worry about. His legacy is set in stone. When I was little he played with me, and I don't mean he threw a ball for a few minutes or that he played peekaboo from his chair in front of the TV. He downright PLAYED with me. For hours. On rainy days we would play "redlight, greenlight" in the basement. On sunny days he'd set up a baseball game with cousins or family members, or he would help me practice my shooting until the backyard should have probably been declared a health hazard due to the number of lead pellets. He was a huge part of my childhood, and I'll never forget that. Papaw was a schoolteacher, and touched the lives of hundreds and hundreds of people. His 90th birthday was standing room only, and attended by a couple hundred people. I can't imagine what his funeral will be like. I hope they have a big room.

Wednesday, October 14, 2009

Hematologist/Oncologist appointment

Today Manny and I visited Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta
and saw Dr. Dolly Aguilera. I'll try my best to reiterate what she said. Manny screamed most of the way to Atlanta, and whined, yelled, cried and tried to escape the room throughout most of the visit. I would have very much have liked to ask more questions, but as it stood, I had to make the best use of time by asking the poor woman to repeat herself several times so that I could hear what she was saying.

Dr. A asked a lot of questions, the usual ones. She went over the significance of the spots on Manny's brain as well as the tumor on his spine. The spots on his brain, aside from the largest one, she referred to as "bright spots" and said that these types of spots will often be brighter or even fade in subsequent MRIs. She is most concerned with the tumor on his thalamus, the part of the brain that controls a person's personality as well as being a gateway for other parts of the brain to communicate with the rest of the body. Should this tumor begin to grow then treatment would be necessary. Should this happen, Dr. Reisner, the neurosurgeon, would be consulted to see if the tumor could be excised, or surgically removed. If not, then other treatments would be explored.

Children with NF1 have a higher risk of cancer and leukemia. Tumors over the size of 5 cm have an even greater chance of becoming cancerous. Manny's spinal tumor is 1.8 centimeters. If a child with NF1 gets cancer, then treatment options are limited because they can not be exposed to radiation, and are especially sensitive to many chemotherapy drugs. Ironic, eh?

Dr. A wants Manny to have MRI's every THREE OR FOUR MONTHS. What?! That did come as a blow to me. Dr. Reisner had previously mentioned getting an MRI in nine months, then yearly. Thats a lot of sedation, contrast dye and stress to pump into one little guy. Dr. A has recently joined the Aflac Cancer Center's team and came from a group in Chicago that has one of the premier NF1 clinics in the nation. She seems to have a TON of knowledge about NF1 and her interest and knowledge of the disease definitely goes beyond the blood, tumor and cancer boundaries. I am glad to have her as one of Manny's doctors, but this type of thoroughness is well.. a lot to take in.

Dr. A wants to keep an eye on the tumor on Manny's spine (the largest) for fast growth or changes that might mean cancer. Luckily, this tumor is not putting pressure on the spine or any of the soft tissue surrounding it. If it does begin to cause pain or pressure, it too would have to be removed or treated.

Dr. A also told me that getting Manny's eye exams every 6 months is extremely important. Tumors of the optical nerve, liche nodules and other things that could threaten Manny's ability to see may sometimes be quicker diagnosed by an ophthalmologist than by an MRI, or vice versa, thus saving a patent's sight.

We discussed my concerns with Manny's hearing. Although I KNOW that he can hear some things, and even responds to commands when his back is turned to me, he seems to not hear everything. His limited speech sounds much like a deaf person.. nasally. His word for "milk" being a very throaty "nnnguh", etc. Granny told me today that she and Pops were "testing" his hearing by making loud noises behind him, and, being the parents of a child born profoundly deaf, she is concerned about his hearing as well. Although the function of Manny's eardrums has been tested and no abnormalities found, Dr. A's response to what I told her was, "Yes, that is extremely concerning." Luckily, during Manny's next MRI, they will be able to do a very in-depth test of his hearing that will actually test how his brain is receiving signals. This is great news to me, to be able to know if he is hearing well, or if his lack of response is more of a social delay, like Jake exhibited near the same age.

Dr. A also wants to do a blood panel to check Manny's organ functions and for other abnormalities. This will also be done during the next MRI, which will be scheduled for next month. The risks involved in so many MRIs are, of course the risk of sedation, and the risk of kidney damage due to the contrast dye. We will be doing the next MRI next month, but I would very much like to discuss the frequency of these treatments during the next visit. Three or four MRIs per year is just a lot.

This is the part where I usually sum up how I feel about this particular visit. It was definitely more than I expected. The doctor made it clear that there is a spectrum of outcomes with this disease, but I was kind of made to feel like at least some of these things will become a reality in the near future. I guess I've sort of let myself believe, so far, that Manny's case will be less severe, and that maybe if we ignore these tumors.. they'll go away, and one day we'll laugh about that time they told us Manny has a "brain tumor" as he beats all odds and begins to develop normally. I really have trouble with this "wait and see" attitude that I'm supposed to have. It makes me crazy. I know that the cost of this care will put a greater strain on our family, but what are we supposed to do?

As I was leaving, a man, probably in his late 40's came to use the elevator at the same time as me. He had a badge and was some sort of employee of the hospital. We entered the elevator together. The first thing I noticed were his forearms, which were covered in small tumors that looked exactly like tiny beads, peas, and even regular sized marbles had been pushed just underneath the skin. Maybe 50 of these were visible on each forearm and his hands. Probably 30 or 40 more visible on his face and neck. He was otherwise a normal looking man. His speech was short and curt as I asked him what floor he would go to, and he looked at the ground. I tried not to stare but, of course, my eyes searched for cafe-au-lait spots. He had several on his neck and the top of his head. This man had NF1. It just so happened that he was parked near me so I followed him down the sidewalk and stairwell. He was shorter than me, maybe 5'3" and showed some difficulty walking down the stairs.. just a slight limp. Otherwise he went about finding his keys in his pocket, his parking ticket and going to his car like anyone else. The scene made an impression on me, thought I'm not sure I can describe it yet.

I've been grumpy and tired the rest of the day. I really just wanted to write down the facts of the day... I will remember more, I'm sure.

I viewed this video the evening that Dr. Michaels first pointed out Manny's cafe-au-lait spots and familiarized me with the term Neurofibromatosis. It horrified me, and now it inspires me.

Friday, October 9, 2009

Too tired to post this

Again I've let a month slide by without an update. Manny has his arena assessment with Babies can't Wait. He has been assigned an Occupational Therapist who will (eventually) come to the house to do an assessment. We also set up a bunch of other appointments and hammered out some more details. Luckily, during the two hour meeting, Manny cried inconsoleably and begged to be let out the door. The assessment was done by interview only, not by observation. Really the whole thing was a non-event, more of an organizational meeting than anything else, because Manny already qualifies because he's been diagnosed with global developmental delay by two physicians.

I'm tired because Manny has not been sleeping. About 4 or 5 nights out of the week he will sleep for only about 2 or 3 hours (goes to bed fine and easily and on schedule, then wakes about 1 AM) and stays awake until almost time for everyone to get up, around 5 AM or so. He will do this for many nights in a row, then sleep "most" of the night for a day or two. It is exhausting and I don't even want to go into the thoughts that I have some of these nights. I have read a little about sleep disorders in children with NF1, and it seems to be a common problem. I really don't even want to talk about it any more than that.

On a lighter note, Manny has had an appearance change. I cut his hair. And no, its not because of the rude an uncomfortable comments that I have been getting, mostly questions like "Do you secretly want a girl?" (yes, I didn't cut my baby's hair because I am disatisfied with his gender. Shhh.. don't tell, I dress him up in girl's clothes when we're home alone.) or "Is it for religious reasons?" (um......), or "Well, there's gotta be a REASON. What is it?" (I dunno, its a novelty? Its gorgeous? I'm kind of a hippie chick? why not?...) but I digress. I shouldn't be surprised at the fact that people think they should speak every time a thought enters their head. So anyhow.. due to the fact that it was just becoming a huge pain in the ass, I cut my lil dude's hair. He's even more beautiful than before.

Jake went through a bad spell with school, to the point that we had to go pick him up because he was freaking out the teachers with his gagging and hyperventilating. I discovered that he really needs a longer transition time in the morning, so we get him up and we go play on the front porch for a while to get his blood pumping. This quickly solved the problem. Whew..... his father and I both felt like we'd been punched in the stomach when we got the call, fearing a repeat of his first school experience.

School is still doing wonders for Jake. He constantly is more "conversational" if you can call it that. He SINGS all the time, songs from school and television. He is a genius at remembering the words to songs, much to my delight. This morning I was working and heard an odd noise from the kitchen. I yelled for Jake and heard him say "I stuck. Ayuda me (help me, in spanish)." and I went to see what was going on. I shot this video of him singing the "Wonder Pets" theme modified to fit his situation.


I'm still going crazy with Bratsacks. Even with two people helping me part-time I still sew almost full-time. I got word from Parents.com that I will definitely be featured at the end of the month. Thats HUGE! Luckily I have wonderful support. Between Steve and his parents I'm really able to take advantage of this opportunity. I guess the most heart-warming thing about Granny and Pops has to be the budding relationship between Manny and Pops. Pops even beats Granny to the car sometimes to come pick him up. Pops is the one who Manny runs to when he's upset, and I swear the bugger totally ignores me if his grandad is in the room. Its pretty amazing to watch. We have even more doctor's appointments with Manny in the next few weeks (hematologist/oncolagist) and Granny will be able to get Jake off the bus those days so Steve doesn't have to take off work. She'll also be taking Manny part of the time during a music festival next weekend (he is at a phase where he's next to impossible in public... I remember this stage with Jake...whew), and will get Jake after-school while Steve works and I fly to Austin for a friend's wedding. I try to make it very very clear that we dont' want to take advantage of their help, but they actually seem to love it, and never miss an opportunity to spend time with them. Jake is on fall break until Wednesday, and I thought about planning an outing for everyone on Tuesday, but that was a laugh. Granny is too excited to have both of them on her "regular day."... I guess I'll just have to go on our field trip on Monday. What a blessing.

I guess I saved the best for last. Today I went out to the garage and Manny followed. He went to the van, banged on it and said "cahhhhh!" Huh? really? I actually didn't get my hopes up, simply because, though he tends to say words sometimes, its not consistent. He spent the rest of the day bringing me toy cars and saying "CAHH!" SO proud of himself. I hope this is the beginning of real progress.


Now I must sleep. I'm sure I left a lot out, but thats the best I can do tonight.