Message from Keith: January 31st, 2008

Today was mostly a great day. The only bad news was that Taylor's breathing troubles have resurfaced. It's not surprising since her tumor blocks her airway when she sleeps, but it was disappointing to see her oxygen saturation levels plummet at times again today after afew days of not doing so. This is a problem which will delay her discharge from the hospital.

Now for some good news: Taylor ate and drank a little today without throwing up at all. She has not had any vomiting.

Now for some great news: For the first time in many days, Taylor got out of bed. We insisted that she go to the playroom down the hall this afternoon. She did not want to go and tried to delay by staying in the bathroom for a considerable amount of time after waking up. Once she emerged, though, I made her accompany me to the playroom.

Once there, she had a great time. She smiled for the first time in many days. She beat her dad at Memory, Uno Spin, and Candyland before we had to return to her hospital room because the playroom was closing. She told me that she wanted to return tomorrow when it opens again. It was precious to see her happy again, albeit briefly. I hope we see more of that in the days and weeks to come.

Message from Keith: January 30th, 2008

Yesterday was a hard day for Taylor. Periodic vomiting from Monday's chemotherapy was the order of the day. Taylor would wake every 2-3hours and have to go the bathroom (her chemo drugs can have nasty effects on the bladder, so they over hydrate her so she will urinate frequently enough to keep the drugs from staying in her bladder). Each bathroom trip was accompanied by vomiting.

Oddly, Taylor did not seem too affected by the constant nausea. No crying at all. It's terrible to watch as a parent, but T was a trooper. After she finished throwing up and going to the bathroom, she'd lapse back into sleep.

Until today, Taylor had essentially been asleep since her chemo treatment on Monday afternoon. She has been so sedated that one of her doctors grew concerned and decided to diminish the amount of morphine she has been getting. Kris and I were torn about this. I wanted T to be more alert, Kris wanted to spare her the pain. Because I was in France for a week earlier in the month and out of town right before T finally went to the hospital, I haven't been with her through her awful head pain as Kristin has for 3 weeks. Not surprisingly, she is far more sensitive to Taylor's pain than I, and far more concerned about alleviating it. In the end, we decided to lower her morphine dose with the hope that it would result in her becoming more alert.

It was a tough day for Kristin yesterday. Taylor's heavy sedation, her pain and her frequent vomiting was almost too much for either of us to bear. I kicked Kristin out at 1:30 which turned out to be great. For the first time since Taylor came to the hospital on 1/22, Kris was able to pick up Charlie at day care. That was a wonderful moment for both of them. On the way home, Kris took Charlie for a drive through our neighborhood which is something both of the kids love to do. It was one of those moments, though, that emphasized Taylor's absence and Kristin cried.

Overall, yesterday's early homecoming turned out to be a good thing for Kris. She was able to spend plenty of time with Charlie which was important for both of them. Brooke, our sister-in-law, came over and they watched something on TV, while Charles kept sneaking down after his bedtime to be with his Mom. She also got 7+ hours of sleep.

I didn't sleep much here at the hospital last night. I didn't want to be asleep if T needed me to help her to the bathroom or bring her the bucket for her vomiting. She was up every 2 hours or so to do both of those things.

This morning we went down to the radiation oncology office for the first time. Taylor had to be scanned and fitted for various devices that assist in irradiating her tumor. To do this, she needed complete sedation so an anesthesiologist was there to put her out. They also had to give her a breathing tube because of the airway obstruction from the tumor. The radiation oncologist shared the detailed CT pictures he took this morning and showed us each feature. For the first time, I have a good idea of where her tumor is. It is essentially behind her nose, resting on the roof of her mouth. As it has moved back in her head, it has grown downwards so that once it clears her soft palate, it goes down and blocks her airway. The tumor is much further below her eyes than I originally thought. It's also a lot bigger than I thought. It was hard to see that evil mass inside my daughter.

Taylor was extremely grumpy after waking up from the anesthesia. We got back upstairs and she got to see Kristin's dad who flew in from his home in Vegas. She was happy to see her Papa, even if she was still grumpy from the morning's events. Beginning at 2:00 or so, Taylor has been awake. This is the first extended period of wakefulness she has had in over 48 hours. Her vomiting has subsided, although not entirely. Her O2 saturation has been great the last 24 hours after a troubling time on Monday. She is watching one of the Star Wars movies and is much less grumpy. She even ate half a popsicle after some effective cajoling by the peds resident.

We feel like her speech, which has been affected for a month by her tumor (of course, we thought it was a cold for most of that time) has improved today. We might just be reaching for any hopeful sign even if it is just our imaginations, but it makes us feel better, anyway. We are encouraged that she is staying awake longer and hoping that we can be discharged on Friday. Of course, her pain, airway, and nausea all must be under control for that to happen. Plus, we'll be back here at 8:45 every morning next week for doses of radiation (all of which must be administered under anesthesia), so it is not as if we will be leaving this place for long. Still, I yearn to have our whole family back under one roof. I think Charlie, Taylor, and Kris do too.

The Freezer is Full!

Thank you to EVERYONE who has dropped off food to Taylor's house in the past week. I have just received a report that the freezer is in, there is no more room for food! This is great news, and much appreciated by everyone. When the reserves get depleted, I will add some tasks to the Help Calendar so that people can bring by freezer-friendly meals. In the meantime, feel free to check out the available dates to bring a table-ready dinner to the family once Taylor is home from the hospital. Thank you, everyone! Kristin and Keith and their extended family all appreciate the kindness that has been pouring in from all sides.

Message from Keith: January 29th, 2008

Today marks Taylor's one week anniversary at the hospital. It's a weird sort of half-life here. Time passes, but it is as if we are outside of it. Day, night, dusk, dawn, all meld together into a blurry existence. This one week feels like a lifetime. We have many lifetimes to come.

I feel like we turned a corner yesterday. Before yesterday, every piece of news we learned concerning Taylor's condition was bad. Certainly, yesterday's confirmation that her tumor is inter-cranial continued that streak. But, we finally learned pieces of good news. Despite being inter-cranial, the tumor has no brain involvement. Moreover, after extensive imaging studies of her head, neck, spine, chest, abdomen, and pelvis, there is no evidence of metastasis anywhere. That makes a huge difference in our outlook and, more importantly, in Taylor's prognosis. Even better, she finally began her treatment which brings us every day closer to a cancer-free and(hopefully more immediately) pain-free Taylor. It is her pain that has caused us the most worry over the last week.

We finally consulted both the oncologist and radiation oncologist yesterday. I will not rehash the oncologist consultation because Kris already has. The radiation oncologist explained the five-day-a-week regimen of radiation she will receive for 28 sessions. Unfortunately, because of the location of her tumor, they must irradiate otherwise healthy brain cells to stop the spread of the disease and ensure its eradication. She will face life-long side effects. Her adult upper teeth will likely never appear, save a few in the front. Her pituitary gland will likely cease working necessitating thyroid replacement therapy and possible doses of growth hormone as she ages. Her ability to mentally process information quickly may be stunted and she may have to take untimed tests, for instance. She may have trouble with memorization. The growth of her cheek bones may be stunted. Her overall treatment may last only 42 weeks, but many of the side effects will be issues for years to come.

It is hard to consign Taylor to the fate that her radiation and chemotherapy will cause. These are choices parents should never have to make. We have no option, though, if we want to preserve her life (and believe me we do!). The silent malevolence growing in her head has seen to that.

Today has been a hard day because Taylor has thrown up a number of times; side effects from yesterday's chemo treatment. In keeping with the turning the corner theme, however, she has stopped throwing up blood. Although there were considerable amounts the first couple of times she threw up, the last time was blood-free. Another bit of hope.

It is impossible to express how thankful we are to all of the people who have extended prayers, good wishes, and offers of help. We will never be able to adequately acknowledge your generosity and articulate our thanks in a manner commensurate with all of the love we have received. All I can say is thank you all from the bottom of our hearts.

1st Day of Chemo: January 28th, 2008

I think everyone will be happy to hear that Taylor had her first Chemo treatment on Monday. It makes the feeling of helplessness decrease slightly, knowing that something is directly being done to get rid of the tumor. Taylor has a pic line (sp?) in her arm that they used for the chemo. Kristin reported that Taylor was having some nausea last night, but they are unsure if it is a side-effect from the chemo already, or just residual from everything else that has been causing it (morphine, blood in the stomach). Aside from being awful to throw up anyway, they have the added complication of Taylor having an oxygen mask on that they have to quickly deal with when she gets sick.

Taylor will also have radiation 5 times a week for the next 6 weeks. Because of the need to remain absolutely still when receiving radiation, children are put under anaesthesia each time they get it. I know most of us parents can not imagine the stress of having our child go under one time, let alone 30. But it is obviously a great tool of medicine that is serving a much greater purpose in this case. I know we will all be thinking of Taylor each and every time.

As mentioned in earlier posts, the chemo and radiation could relieve Taylor from some of the pain she is suffering as soon as the end of this week. Kristin suspects that if she doesn't have considerably less discomfort in 2 weeks, they will check her again to make sure the treatments are working as planned. Everyone is anxious for Taylor to be out of pain as soon as possible and back to her old self. Keith reported that when he stayed with her 2 nights ago, she had a period of about 3 hours that she was up and feeling less discomfort and being herself, which was great.

Email from Kristin: January 28th, 2008

We finally have all of the news on Taylor. They were able to expedite the MRI and it was done yesterday. Squeaky wheel gets the grease! They were trying to see if the tumor was intercranial and if it was in the brain. There had also been a spot on the bone scan on her spine that they needed to confirm was not cancer. The results show that the tumor has gone through the cranium and is pushing up against the brain. The good news is that it does not seem to have invaded the brain. We are very glad that we pursued the MRI as we did because itis just sitting right there waiting to pounce! The other good news isthat the spine is clean! We were relieved to hear this.

Today we will begin chemo. I am excited that we will finally be working to make the tumor smaller instead of sitting around every dayas it grows bigger. She will probably feel pretty lousy for a while.They expect that the pressure in her head and the breathing issuesshould decrease by the end of the week. We need everyone's prayers that the chemo and radiation will work. Due to the fact that the tumor is intercranial, they will start radiation this week. They have found that it tends to control the growth by starting early.

Thank you to everyone that has sent their well wishes and offers of support. Please keep Taylor in your thoughts and pray that the chemo and radiation are effective. If her blood counts are okay, she might love some visits early next week!

E-mail from Kristin: January 26th, 2008

So we finally have the results of the biopsy. As suspected by the doctor, this is a rhabdomyosarcoma. The tumor has invaded the bone and they believe that it might also be invading the brain. On Friday we were told that she was going down to MRI to have pictures taken of her head and neck. They got her down there and then learned that she would need to be intubated during the procedure because they sedate the kids for this so they don't move. They then returned and said they also need spine pictures and they didn't have time for that and sent her back upstairs. We later learned that there might be a small metastisis on the spine that showed up on the bone scan but most of the doctors believe it is an "artifact" from a prior injury or something.

They cannot start chemo until they get pictures of the brain. If the tumor is invading the brain then they need to start radiation and chemo at the same time. They do not do MRIs with sedation on the weekends and we were told that the first available time they had would be able to do it is Tuesday. That was not acceptable to us, so we made every effort to find someone or somehow to do it before, We were able to get it moved to Monday, I think. So this weekend we are praying and trying to keep her comfortable.

Taylor has a very serious tumor in a very serious spot and if it has moved to the spine, that adds another serious complicating factor. There is also good news, though. This particular type of cancer is very sensitive to chemo and radiation. She is young and healthy (other than the cancer thing) and she is at one of the best places in the world to treat this. She should start chemo on Monday or Tuesday and the doctor thought that she would have some relief from the pain and pressure by Friday.

We hope that everyone can continue to keep her in their thoughts and prayers. We are soooo lucky to have so much support from our friends and family. We see many single mothers down here trying to tend to their sick child and also have another child on their arm with no one to help them. We are fortunate to have an army of people cooking, cleaning, caring for Charlie, and offering us relief at the hospital-what a difference that makes!! I will send out more updates when I hear things. We are try to keep smiles on our faces for Taylor but I think she is onto us!

E-mail from Kristin: January 24th, 2008

I am not sure if I have told all of you but the annoying sinus infection was not a sinus infection at all. The doctor finally had a ct scan done of Taylor's head (on Tuesday, January 22nd, 2008)after she began throwing up blood and was more congested than ever. The ct scan showed a mass in Taylor's throat. They sent us right over to the ENT doctor who reviewed the slides and decided that it was probably a tumor. They sent us to Children's Hospital and Taylor was admitted to the oncology floor. It was obviouslyfrightening for all of us and we had the added benefit of having Taylor throwing up eight times- tinged with blood. She is just so lethargic, in EXTREME pain, and not herself at all.

Today was the biopsy. We were scheduled to be picked up at 8am for a 9:00 surgery. It turns out that we were picked up at 2 for a 3:15 surgery. Taylor was not allowed to eat or drink anything but I don't think she would have wanted to anyhow. She was so afraid and cried, kicked, screamed, and told us she was just NOT going to have surgery. It broke our hearts to have to force her to be wheeled into an operating room with neither one of us with her where they performed a biopsy, implanted tubes in each ear to drain all of the fluid that had collected in them (she could hardly hear anything), insert a pick line into her arm, a lumbar punch and a bone marrow test, especially knowing that after it all she wouldn't even feel better.

The last few days had been very hard because they were only allowing her to take tylenol because of the surgery and swelling in her throat. They were afraid that she would stop breathing if they gave her any narcotics because they slow breathing and her throat wasc losing up. She has to wear an oxygen mask all of the time. We also could barely understand her because of the swelling in her throat which really frustrated her. During the biopsy, the surgeon was able to scrape her throat so she is a bit easier to understand. They said it will be two or three days until the results come back. The surgeon says he has a very strong hunch that it is a rhadomyosarcoma but we will not know for sure for a few days. I am told that those tumors respond pretty well to radiation and chemo. The unfortunate thing is that they probably will never be able to operate on this because it is going to be far inbedded in the head and that often leaves a few stray cells wondering through the body.

We are going to be doing a number of scans today to see if there are any other tumors present elsewhere. Feel like I have been there done this before! Hopefully we will be able to start chemo late this week or early next! This child needs some relief!

Thank you so much for all your thoughts and good wishes. Please continue to pray for Taylor, we have a long road ahead of us.