Update from Kristin: March 31st, 2008

Taylor has now been home for five nights. It has been a bit of a roller coaster for all of us. The first night home she was in a great mood and ecstatic to be here. The next day she became very sad. It seemed like she had just been so excited to get home and have everything be normal again, but it isn't normal and it isn't going to be for a long time. She spent a great deal of the weekend with her head buried in her pillow. It was hard to tell if she just wasn't feeling well or was really depressed.

She is still battling pain in her head and throws up about once or twice a day. The mucous situation has still been pretty severe. We had the foresight to have a mechanical suction machine brought in and if I give her $5, she will use it. It's that easy! We aren't certain why she has been throwing up. It isn't all bad because it brings out a lot of the mucous which plagues her breathing and speech, but I am starting to suspect that it is the food. She needs to consume six cans of the formula a day to reach her calorie requirement. We aren't quite there yet, especially when you consider that some of it doesn't stay down. We go back and forth between thinking we should slow down on the food or just pump it all in with the hopes that some of it sticks! I think that she has a fragile stomach and that much formula is just a little rough of her tummy.

Keith was brave enough to take her to Target for a few hours yesterday to pick up a few things. The muscles in her legs and her stamina are gone since she has been in a hospital bed for about two months. The outing was good for her and she seemed to enjoy it even though it was tiring. And yesterday afternoon she was in great spirits. She was out of bed for most of the afternoon, even though she was on the couch for the majority of the time. For the first time in two months, she went to bed at bedtime without her movie machine running and it almost seemed like normal. Unfortunately, we didn't have the same luck with Charlie who got out of bed about five times after we put him to bed.

We are all so happy to have Taylor home even with its ups and downs.The nights are long for mom and dad (mom, really) as Taylor requires pain medication at least once a night - not because she is awake and asking, but because we don't want her to wake in the morning with withdrawals. We also have to bring the food pump in and out in our effort to reach our six can goal. She sleeps through most of that, so it bothers us more than her, at least!

We return to the clinic at the hospital tomorrow for a half hour appointment so they can check her and determine if she is ready for chemo at the end of the week :( Then the entire cycle starts again! Hopefully the next week will be a happy comfortable one filled with healing. Her mouth does seem to be improving a bit and it isn't as bloody as before, so the news is not all bad!

She's HOME! March 27th, 2008

I received the great news this morning that Taylor came home from the hospital late last night! She is very happy to be back. More to come from K or K later today... Hooray, Taylor!

Update from Keith: Easter: March 23rd, 2008

Last week was mostly great. The news of her CT scan--although her oncologist kicked us in the shins by telling us that even tumors which shrink under therapy can ultimately lead to bad results and so her prognosis is really no different--and the end of radiation made last week great. The first couple of days were all smiles and T was in great spirits.

It wasn't long, however, before the past Friday's chemo kicked in and her white blood cell counts plummeted. With the demise of her white blood cells went her ability to heal from radiation. Wednesday through now has seen Taylor fighting the horror in her mouth, constantly gagging, sometimes vomiting as she deals with her radiation and chemo inflicted injuries without being able to fight them. Not until her counts come back up (which is probably not until late next week judging by her body's past performances) will her condition improve.

As Easter dawns through the window behind me with its promise of resurrected life, I do not feel the joy that such a day should portend. It's been a feverish night, with some of the highest temperatures I've known Taylor to have. Her breathing is labored; her sleep interrupted by bouts of gagging, coughing, throwing up, as she struggles to expel the vast quantities of bloody mucus in her throat. It's not pretty.

I can't say when she will leave the hospital. Today begins her 27th consecutive day here. She has spent all of March in this timeless room; unaware of the change of seasons outside. I want so badly for her to come home but Kris reminds me to be careful what I wish for. This night is a great example why she's better off here. Had we been home and she started this fever we would have had to rush back here which would probably mean 24 hours in the Emergency Department while they scrambled to find her a bed up here. That would certainly be worse than this.

So, I watch her fevered sleep and measure time by racing heart beats and hope for better times ahead. That can be Easter's promise.

Update from Kristin: March 22nd, 2008

It looks like Taylor will have the opportunity to celebrate Easter with all of the patients here on 4 West at Children's Hospital. Taylor has been battling severe mucositis this week and it causes her to gag and often throw up. The doctors said that they can not send her home until she stops throwing up so often. We are really disappointed because we really wanted her home for Easter. However, she has no white blood cells and we suspected that even if we had taken her home, we would have ended up back here in the emergency room with a fever on Saturday night. As it turns out, we never would have made it out the door today even if they had been planning to let her go, because she spiked a fever at noon and has been battling one all day.

When the attending came by, he told us that since she now has a fever, we will not be able to go home until her blood counts improve. If the last chemo cycle was any indicator, it looks like we may be here until next Friday. If it isn't one thing for poor Taylor, then it is another.

I am not sure that I have ever seen anything as frightening as her mouth looked today. It is filled with bloody mucous that gets lodged in her throat and gags her. I have heard it said over the past few weeks that the head and neck are terrible places to have radiation and I am starting to understand why.

They also chose not to give her the weekly vincristine injection today. Her eyelid has been drooping and that can be a side effect of the vincristine. Although we would prefer to be as aggressive as possible with her treatment, it is nice to think that her body will get a week of rest from all chemo and radiation. Perhaps this time next week, we will all be home again...but I think that I said that last week and probably the week before that!

RADIATION IS OVER! March 17th, 2008

Taylor received her LAST radiation treatment this morning!! Hooray! The hope is that her mouth and throat will now begin to heal which should improve her overall well-being significantly.

Additional good news: Yesterday Taylor had an impromptu CT scan because the Drs. were suspecting that she had a sinus infection. It turns out she does, so they are changing her anitbiotics. BUT they did the CT scan with contrast so they could get a good picture of the tumor. This was six weeks earlier than we expected to see it, so no one was really mentally prepared. However, it turns out that the treatments have really been working and it is much, MUCH smaller than it used to be! The radiation oncologist was very pleased with the results. There is still some tumor on the left side, but that is not unusual and the chemo should hopefully work that away in the next few months. We are very excited with the progress!

Happy St. Patricks Day!

Update: March 14th, 2008

Nothing ever seems to go as planned! Taylor went to radiation yesterday where she was supposed to get her new PICC line while sedated. Well, the PICC nurse tried to insert a new PICC and it wouldn't work. So the anesthesiologist assessed her and decided that she would do fine in surgery for a port. So we did not have chemo yesterday, but we are scheduled for surgery for the port today after radiation. And then she will have chemo. And her very last radiation, barring any unforeseen circumstances, will be on MONDAY. Hooray!

Keith lands tonight at 9. Taylor can not wait. She was a missing him yesterday and wished he could be here today for the surgery. But he will return tonight to her treatments being back on track.

Update from Kristin: March 12th, 2008

Taylor is hanging in there in her way... not great, not awful. Nana is with her tonight (Wed) so hopefully it will be uneventful. Taylor was able to receive her radiation treatment today (hurray!). Tomorrow morning she will hopefully get the first of her LAST THREE treatments and during the sedation, they will place another PICC line. The last couple of days, they had been talking about replacing the PICC she had with a port, but a port would require a trip to the operating room (because she is sedated during radiation, but not put under entirely) and the doctors thought that would be too risky with pneumonia.

By the way, a PICC line is a central line that carries the drugs deeper into the body. We need either a port or PICC for chemo to begin again, so we will take what we can get! Chemo can not be done as safely with a regular iv because it delivers drugs to the veins. We are hopeful that she will get the PICC during radiation in the morning, and then her chemo tomorrow afternoon!

Taylor's mucous is so severe and so nasty. We think it is the reason that she is throwing up these days. We weren't certain if the mucous was a result of the pneumonia but we are told that this is a "normal' response to radiation and she is getting a very strong dose of radiation. The next few weeks will probably be rough for Taylor but after that, we hope to start the healing process!

Update from Keith: March 11th, 2008

As if cancer wasn't enough, Taylor has pneumonia now. The radiation scheduled for today, the surgery to get the port working scheduled for today, and the chemotherapy scheduled for today were all canceled because of this new danger. The good news is that the docs think it should be relatively easy to control. We're hoping she'll resume her normal treatment tomorrow (Wednesday) or Thursday at the latest. We were strongly hoping she'd come home at the end of the week. I don't know if that is still possible.

Last night (Tuesday) was a miserable night. T's hand was swelling where they had put in her IV Friday after removing the PICC line. This made it necessary for her to get a new IV, this time in the other hand. No fun for a 5 year-old (or even a 35 year-old). It seemed a temporary solution at the time since she was supposed to get her port today. Of course, as I mentioned above, that didn't happen.

Getting the IV was the easy part of the night. Taylor threw up at one point just after receiving a number of different oral medications through her NG tube. This required the feeding to be turned off for a while and the medicine to be re-administered.

Nights with T of late are hard. She retches (dry heaves) often into her bucket. Sometimes it culminates in full fledged throwing up, as it did last night. Most times, it is just another reminder of her discomfort and pain.

Last night her heart was racing all night long. She fell asleep readily but it was a fitful sleep. Frequent moaning was accompanied by thrashing about. She was clearly uncomfortable. Even while sleeping, her heart beat 170 times a minute. Her normal sleeping heart rate (normal meaning with cancer since we never needed to measure her heart rate before she was diagnosed) is between 100-120, usually closer to 120. 170 is off the charts fast for sleeping. Worse, when she awakened to use the restroom her heart rate exceeded 200. Clearly something was very wrong.

Usually we suspect her elevated heart rate is the result of pain in her body. That's been true most times in the past. But last night she consistently reported no pain (at least at the beginning of the night). I kept summoning her nurse and we paged the pediatric resident who came down a couple of times during the night. None of us could figure what was behind Taylor's sprinting heart. Finally, around 3, Taylor began exhibiting a fever. A chest X-Ray confirmed that she has pneumonia.

It's good that everyone thinks it is highly treatable and will clear up quickly. But the pneumonia is preventing her cancer treatments from continuing and we don't like that. We were so anxious for this to be her last week of radiation. Now, the hell in her mouth will continue past this week.

I feel like we've done nothing but take steps backward. Every time we feel we are getting the handle on something, something worse pops up and changes her treatment. Although none of this should affect her overall prognosis, it is emotionally wrenching for all of us--maybe T most of all. When she finally got out of the hospital in mid-February after her initial stay, I thought that we would never again be in the hospital that long (22 days). This is night 16 of this stay, and even if they give her chemo tomorrow she'll be there through at least night 18. More than 22 is still in the picture. It feels endless.

Someday this will be past. Someday the last 8 weeks will seem like minor bumps on the road to cancer victory. But right now it feels unmanageable; insurmountable; crushing. And it will mostly fall on Kris and T; I'm headed to NYC in the morning for work, not to return until Friday night. I'd like to believe that Taylor will be home when I get back, but I know better. Hope is in short supply of late.

Update from Kristin: March 11th, 2008

Everyday presents a new hurdle! Last night, Taylor spiked a fever and her heart rate was in the 170's. Radiation, the port placement, AND chemo were all postponed. A chest x-ray was taken and it seems that Taylor has a little case of pneumonia. The doctors are not overly concerned with this and feel that antibiotics should take care of it in a day or two. We are not sure when they will decide to do the radiation, port, and chemo but hope it will be in the next couple of days.

Her heart rate has dropped a bit today and she is in pretty good spirits. She even made it down to watch a magic show today. She has been such a good sport and I am so proud of her.

The past 2 days have been pretty procedure laden: yesterday they had to replace her IV and she has had numerous pokes to have blood drawn. She has been so very brave. The chest x-ray also showed that the NG tube was a little high so they had to untape it and push it down into her stomach further. To do this they had to remove the tape that was holding the tube in place - it turns out that having tape removed is far worse than any needle! But they were able to correct the problem and they are hoping that it will resolve some of the stomach upset that she has been experiencing over the past few days.

I have to say that it is really easy to get frustrated because it seems like Taylor can not catch a break. However, with the big picture in mind, there are still a number of people walking through these halls that currently face much larger and more permanent obstacles than Taylor and they still manage to put smiles on their faces.

Today we had the opportunity to meet a boy in the playroom named Enzo. Enzo was treated last year for a rhabdomyosarcoma that sounds very much like Taylor's. He had his tumor in the exact same location and he also had an intercranial extension just like Taylor. Today, Enzo is in remission! He was just back at CH today for a scan. It was great that Taylor had the chance to meet him - to see how he was running and playing and that hopefully in a year from now, she will be doing as well as he is. We will try to keep everyone posted. Please continue to pray for Taylor!

Update from Keith: March 8th, 2008

We seem to be taking more steps backward than forward. Tonight, we were playing in the playroom when I noticed some blood in Taylor's PICC line. Her PICC line is the tube they inserted into her arm during her initial surgery back on January 23. She gets all of her hydration through her PICC line and the vast majority of her medicine goes through there as well.

It is not altogether unusual for her to have blood in her PICC line. On Thursday night, they transfused her through her PICC, giving her another unit of red blood. Every day they take blood from her PICC, so they can check her blood counts. These things can leave a little red tinge in the line.

Tonight was unusual, though. Her pump was on and was was supposedly pumping medicine into her arm. With medicine and hydration going in, no blood should be coming out. So, I went to the nurse's station while Taylor was working on some construction paper in the playroom and told her nurse what I had seen. The nurse came into check it and immediately said we had to go back to her room.

Back in her room, they determined that there was a hole in her PICC line. This is problematic. The easy problem is that it prevented her from getting anymore medicine and hydration. They gave her an IV in her other hand so that they could accomplish this. The hard problem is that the hole could allow infectious agents into her bloodstream which could make her septic. We're monitoring her temperature to make sure that this hasn't happened. The end result was that her PICC line, which can only be inserted surgically, has been removed (that was a painless matter of just pulling it out, which the nurses did over T's objections). The IV is only a temporary solution as it cannot be used to deliver chemo, which she is scheduled for on Tuesday. Most likely, she will have to have surgery on Monday to insert a new line.

I'm hoping that she'll get a port this time, instead of a PICC or other catheter. Initially, Kris and I were dead-set against a port. Kris had a catheter when she had cancer and we thought it was so much better than a port because a port lies under the skin necessitating a needle poke each time the doctors/nurses access it. This seemed a needless waste of pain to us. We didn't want T to have to go through that and were glad that she had a PICC (PICC stands for Peripherally Inserted Central Catheter).

Now, however, I favor a Port. For one thing, the skin acts as a natural barrier against infectious agents (although we are told that catheters and ports have about the same rate of infection). More importantly, a Port is far less restrictive than a catheter. T can't take a bath right now without wrapping her lower left arm in plastic to keep the PICC out of the water. There is no need for that with a port. This isn't such a big deal now, but during summer when she may want to go swimming, that could be huge. Also, the PICC just gets in the way. It is always sticking out of her arm and flopping by her side even when not hooked up to fluids. I'd rather just have the port which stays out of the way and could allow her to be more active (of course, active is the last thing she wants to be right now, but I am trying to think ahead a few months to a time when I hope things will be much better). Her oncologist has said all along that he prefers a port, but I'm not sure that there is that much time to plan ahead for Monday right now. We might just have to take whatever they are prepared to give us on Monday.

Taylor mostly had a good day today. We went for a short walk outside the hospital in the garden. The sunlight, which she hasn't seen for 12 days, practically blinded her, but it was nice to get out. Her pain has seemed OK today, although something in her mouth was bleeding tonight. It's a nightmare inside there. I'm glad it is too painful for her to open it very far. I'd be scared to see the sores that lie inside.

She has only 5 radiation treatments to go. That should be completed next Friday, but my guess is that she might miss at least Monday because of her failed PICC. They need to access a line to deliver her the anesthesia, and I'm not sure that they'll want to do it with just an IV and I'm not sure they'll want to put her down twice to also giver her the new line/port. We'll have to see what Monday has in store for us.

Looking back at the blog I wanted to update a couple of old issues. Things happen slowly here for us and we often forget to report on concerns that have receded since they are always replaced by fresh ones. Taylor's breathing issues have essentially completely subsided. Her sats aren't perfect but they rarely fall into danger territory anymore. When they do, it is usually because she has so much gunk in her mouth she can't take much air in. Taylor and I have reached an agreement about cleaning her mouth; she won't allow anyone else to clean it (at least when she is not under anesthesia) and I won't force it as long as she does a good job cleaning it herself a few times a day. Thus, T has become pretty good about swabbing her mouth out and cleaning it thoroughly. I'll spare the gory details, but suffice to say that some of the cleanings are especially productive and lead to a marked improvement in her respiration.

T's pain also seems to be much better these days. Dilaudid has made a good difference for her.

T hasn't thrown up for a few days which is nice. She continues to receive nutrition through her NG tube. I hope she's gaining some weight.

Today she got a bath for the first time in almost 2 weeks. She objected beforehand but enjoyed it enough that it was hard for us to get her out.

I hope this weekend will be uneventful. Monday certainly won't be.

Update from Keith: March 6th, 2008

Tonight is Taylor's 11th consecutive night in the hospital in this, her fourth stay at Children's. Her first stay lasted 22 nights, so this is not the longest stay she's had, but we'll probably be there at least another 5 or 6 more since she has chemo on Tuesday next week.

People ask me all the time what we think of Children's. I would not want Taylor to be anywhere else. They do nothing but treat kids. All of the doctors, nurses, technicians, etc. know how to treat kids. That is impossible to duplicate. Moreover, many of her treating physicians are experts in pediatric cancers and treatments. That also can't be duplicated. In addition, Taylor sees that all of the other patients are kids, too. She is not the only kid with cancer. I think this makes her feel a little better.

But, every day I go there, my stomach clenches. I can't help but feel some times that it is a nasty place. After all, my daughter has spent her most painful nights at that hospital. I lament every night she spends there.

The hospital also has a number of communication difficulties that I won't elaborate here. Suffice to say that the lines of communication between her health care professionals and us are often poor as are the lines of communication between many of the doctors treating her. We are constantly frustrated by this. The hospital also suffers from the same shortcomings that any teaching hospital possesses. As with everything cancer, we take the good with the bad. In this case, (as I hope with Taylor's treatments) the good far outweighs the bad. The bad just tends to stick more in our craw.

She routinely receives excellent care from her nurses on 4 West, nearly all of whom have treated her at one time or another. Last week, we had a substitute nurse one day who didn't work out so well. Taylor was due to receive an antibiotic that was supposed to be infused through her line via a pump over approx. 30-45 minutes. This corresponds to a rate of 70 ml/hr. The nurse accidentally set it at 770. The entire dose was in her bloodstream after no more than 2 minutes. T's head immediately turned red and she started scratching all over. She was reacting to the too-quick dose of the antibiotic. They immediately summoned 2 pediatric residents and an attending and administered Benadryl to stop T's reaction. It was a tense few moments but quickly corrected. To the hospital's credit, the nurse who made the mistake immediately summoned the appropriate doctors and everything turned out fine. Better to have it happen with one of her antibiotics than her chemo drugs. I now watch very closely as they set the rate on her pump.

Like all weeks at the hospital, this one has been a roller coaster. Monday started out well. She gained half a kilo over the weekend by receiving relatively small doses of formula through her nasal tube. She seemed to be tolerating it well and her temperature had remained at good levels. By Tuesday, we were starting to get ready to go home again. In fact, they changed her feeding from a constant rate to simulated "meals" spread throughout the day to get her body accustomed to what it would be like at home. Kris learned how to take care of her NG tube and we were ready for home.

That's when things turned. She threw up after her second "meal." That killed that idea. Wednesday was misery. Her pain was as bad as ever, she threw up again, and got a fever Wednesday night. Her heart raced all day long, beating 170 times per minute while resting. This is a strong sign of discomfort and trouble. They stopped her nutrition again and replaced it with pedialyte so she could get some electrolytes.

Thursday was much better. Taylor is off Morphine. It just doesn't work that well for her. She is in constant pain even with the constant morphine drip. They've tried various dosing amounts and nothing has ever been satisfactory. Kris pushed really hard to finally get them to give her something different. Now she is on Dilaudid which is another opioid but which has been more effective for Taylor, at least so far. To get her to judge her pain, they show her a series of faces that go from smiling and pain-free, to agonizing. Taylor is now accustomed to pointing to the one which describes her pain. Tonight, she pointed to the happy face which corresponds to no pain. I was pleased. Her heart rate is in a more normal range as well.

T was great this afternoon. We played in the playroom, brought Chutes & Ladders back to her room after the playroom closed (she won and we didn't even have to let her) and we played Spiderman dominoes for a while. After that, we read another chapter of Harry Potter and the Chamber of Secrets (Year 2 at Hogwarts for Harry) and she listened to her iPod. She even sang along to the songs (although it remains extremely difficult to understand her vocalizations).

There are 6 radiation sessions left. If we do them all as scheduled, next Friday, 3/14, will be her last (I'll be out of town unfortunately and will miss it). Hopefully, she will begin healing in the weeks that follow and I am cautiously optimistic that mid-April will see Taylor able to eat and swallow on her own.

For now, I think she'll probably be in the hospital for the foreseeable future. Her fever situation seems to keep fluctuating and her white cell counts remain quite low. Her nutrition is important and she seems to tolerate a constant rate much better than a "meal" which is all we could do at home. Plus, she has to be admitted for chemo next Tuesday in any event, so it seems unlikely to me that she'll go home before mid to late next week. Of course, communication being what it is around there, maybe they have already prepared her discharge for tomorrow without saying a word to us. It wouldn't be the first time.

Kris had a hard day on Wednesday witnessing Taylor's pain. She was able to go home for a few hours today but is spending tonight (Thursday) at the hospital. I'll be there tomorrow night.

My sincerest apologies for not updating the blog sooner. I know from hearing from many of you that you check it daily. Last week, though, was simply too tough. Nothing felt happy, no news seemed good. Worse, neither Kris nor I are getting more than 4-6 hours sleep at night and updating the blog is often that one extra thing that means 30 minutes less sleep combined with wrenching emotions as we leave the days past. Still, I resolve to do better in the future. It's always easier when, as now, things seem improved.

Update from Kristin: March 1st, 2008

This has been a very challenging week. We are still in the hospital and may be for a while longer. The feeding tube was placed on Friday morning and the feedings have begun. Taylor has a tube that goes into her nose and runs down her throat and into her stomach. It allows them to give her formula which is designed to meet all of her nutritional needs. They have started it very slowly and are watching her carefully to ensure that she tolerates it. If this does not work, they will have to resort to tpn, which is iv nutrition. It is very hard on the liver and is really a last resort. Initially, we were very resistant to the tube. It seems now, however, that the doctor \s expected that this would happen. It wasn't really a question of "if" but "when" because radiation to the mouth and throat causes discomfortand ulcers which makes it difficult to eat. We only wish that we had known this earlier because we fought such an emotional battle with Taylor trying to get her to eat. She spent many meals crying and trying hard to please us when it was really a losing battle all along. That is in the past now and we are all relieved, including Taylor, to have the tube. Her body faces such assault and needs to do so much healing. It is nice to know that she will have the resources to repair herself now.

Unfortunately, this was also the week that Charlie came down with the stomach flu. He had been staying with his aunt and uncle while we were in the hospital and his aunt, Brooke, called me on Thursday morning to tell me that Charlie had been up throwing up the night before. Brooke is a saint and is heaven sent and not only said she would keep him with her that day but suggested that she keep him another night so we would all be spared from the bug and would not risk bringing it down to the hospital to Taylor. It was so hard to not be able to be with Charlie when he needed us most. But aside from telling me that he was not my friend anymore, he seems to have forgiven us.

The most difficult part of the week for me was the return of breathing difficulties. It was all too familiar and it frightened me. The doctors have reassured me that she is swollen and congested from the radiation. I just pray that is the case. The fever which brought us to the hospital has broken and her blood counts are on the rise. We have two more weeks of radiation and she will probably take two or three more weeks to heal after that. It looks as though we have a long month in front of us, but hopefully it is all worth it!