As we wrap up 2008, we just wanted to give thanks to all the friends, family, and strangers who have taken the time to read our blog. We have blessed many times over as we share our battle with you and we thank you for all you do to encourage us and help us along our path.
As always, PLEASE get involved so that we can continue to grow. Here’s how you can help (if you are so inclined):
- Participate in commenting
- Subscribe to the blog
- Suggest a post idea for a leukemia topic you would like to understand better
- Link to the site from your own blog
- Share the blog with others that might be interested
Thanks again for your support!
Wednesday, December 31, 2008
Sunday, December 28, 2008
Thank goodness that Tyler's fever went down and the UW released us on Friday night. So, we got to start our Christmas on Friday night. We spent Friday evening relaxing with Tyler's mother and brother to kick off the holiday. Then on Saturday, we stopped by Tyler's dad's house to visit with Scott, Kate, and his grandma Mimi. It was such a treat to see them and get to enjoy a few minutes at their home.
On Saturday evening, I drove to Kent to spend some time with my extended family. Although I was a little bit too late to see a few of the family members (that had to drive home that night), I did get to visit with several folks. It filled my heart to see my niece and nephew's excitement over gifts and to talk to family about what's going on with them.
At our clinic visit yesterday, we learned that Tyler's WBC was 4.09 (normal = 4.3-10.0), his Hematocrit was 35% (normal = 38-50), and his platelets were 107 (normal = 140-400). Those counts were quite positive and we hope that he continues to hover in normal ranges.
He has his data review conference on Monday. This is the review of all of the testing they have done on Tyler to see if he can go through the transplant. Tyler must sign the protocol agreement to commit to the transplant at this point. If we sign those papers, we are going forward, full steam ahead!
His test dose is scheduled for Tuesday, January 6th. This is where they give him a tiny dose of the radioactive antibodies to make sure it will travel to the correct areas of his body when he gets the full dose later in the month. The theory behind Tyler's protocol is that these radioactive antibodies will be infused into his body and will target any fast-growing cells in the body to kill them with radiation. While most of the fast-growing cells in the body are cancerous, he will also have more mucositis as the fast-growing cells in his mouth, throat, and stomach are likely to be affected too.
Regardless, I hope that we will be able to stay home until Tyler's therapeutic dose mid January. He'll be radioactive for 7-14 days after the full dose of the radioactive antibodies, so he will need to stay in the hospital for a while. He may also have some side effects that require him to be hospitalized for a while longer. Almost 2 weeks after the therapeutic dose, Tyler's actual transplant will take place. We HOPE there are no more delays.
Enough about our crazy Christmas... We wish you a Happy New Year and hope that ours will be marked by improvements we can share with you.
Wednesday, December 24, 2008
When we woke Tyler up to start his TPN yesterday, we discovered that he had a temperature of 100.9. We're supposed to call the SCCA anytime he has a fever of at least 100 degrees, so we called in to see what we should do. Although I did my best to talk them out of it, the decided we really needed to come back to UWMC and see if we can find the source of the fever. We left home about midnight, so I was thankful that the majority of our drive was on freeways and the snow/ice had been driven away from those stretches of road. Meanwhile, Tyler's fever continued to climb through the night.
Today they are telling us that they will want to observe him for about 48 hours, but they are hoping that they can actually let us go home tomorrow. Since Tyler is no longer neutropenic, it bodes well for our escape from the hospital. They figure his body can help do some of the fighting of any infection that might be in his system. With luck, they will be able to identify the source of the fever and give us the correct treatment for it.
The UW staff has been great though! Several of the nurses have come by to say hi to us, even if they weren't officially assigned to Tyler today. It's nice to see so many familiar faces, although we would rather have run into them at the grocery store as one of the nurses suggested to us.
Wish us luck in getting the fever to break today and in getting home safely tomorrow.
Tuesday, December 23, 2008
Our friend, Hans, has also started a blog to allow us to keep up with his battle. You can find him at http://ftbwtw.spaces.live.com/blog. In case you are wondering about the strange combination of letters, Hans says he is "Fighting the Battle, Winning the War". He posted this week that his white blood counts were down to 62,000. Hooray!!
As for us, we have a 3 day break from the doctor's office! Tyler did get his bone marrow results on Monday and they were a little bit disapointing. His bone marrow biopsy showed signs of blasts. The doctors were not overly concerned about it, as the transplant protocol that he is scheduled for will allow for some presence of leukemia in either his marrow or his blood. As long as his spinal fluid stays clear, we will be able to continue with the transplant.
Tyler continues to work on eating meals again. He fills up after just a small amount of food, so we have to try to eat many several little meals. He has started taking pills again, so I'm pleased to report that we see definite signs of healing. Although he doesn't feel like his throat is back to normal, it's moving in the right direction.
Merry Christmas from both of us!!
Friday, December 19, 2008
The medicines that Dr Johnson prescribed have worked WONDERS for Tyler! We got home about 3:30 or so that day and Tyler went straight up to take a nap. He slept from 3:30-8:30pm, got up for about an hour, then slept from 9:30-3:30, took a little bit more medicine, and slept from 3:30-6:30 (when we had to get up for the doctors appointment on Thursday). Even after the 1st nap, Tyler said that he felt much improved.
We had a Thursday morning appointment at SCCA for a Bone Marrow Aspiration, so we braved the snow and ice to get down there. Actually, our commute went pretty smoothly, thanks to the Subaru! It snowed the entire time we were down at SCCA, but we got home without any problems about 11am. Tyler had some lunch and then went up to take another nap.
This morning, when he woke up, he marveled that he had actually slept for 16 of the last 17 hours. I'd say he is well on his way to catching up on sleep, although he is down for a nap again this afternoon. I'm hoping that I'll get a chance to see him for dinner tonight.
I've been keeping busy working from home and baking cookies for my work's Christmas Cookie exchange. Sadly, it's been rescheduled again from Thursday to Friday to Monday because of the snow. I'm thinking that gives me the perfect opportunity to bake some more, right?
His nurse, Jackie, called this afternoon to talk about Tyler's medications and she was able to give me the results of his lumbar puncture from Wednesday. It turns out that Tyler's spinal fluid is still clear of leukemia! Great news for the January transplant date. We hope to keep on this track as we coast towards his scheduled appointments in January.
Wednesday, December 17, 2008
Tyler had a few tests today, so we were lucky that the snow held off long enough for us to get to SCCA and UWMC for our tests and appointments.
First off... Tyler had his blood checked today and I'm pleased to report that he's making good blood!
WBC: 2.07 (normal: 4.3-10.0) Hooray for White Blood Cells!
ANC: 1.12 (normal: 1.8-7.0) Hooray for Neutrophils!
HCT: 32% (normal: 38-50) Hooray for a great Hematocrit!
PLT: 97 (normal: 150-400) Hooray for Platelets!
Although he's not in normal ranges yet, I would say he is making FABULOUS progress in blood creation. I was looking through the test results and saw that on Saturday (his first day out of the hospital), he lab tests actually were rechecked for White Blood Cells and Hematocrit because there was a "Significant change in lab result". How is that for a Go Home celebration?!?
On the down side, he continues to have significant problems sleeping at night. We talked to the doctor about our concerns and they have prescribed some medication that we hope will alleviate the discomfort Tyler has been feeling at night. His numb foot is apparently very sensitive and the feel of the sheets causes a great deal of discomfort for him. We're hopeful that our new medicines will help us get a full night of sleep, as we desperately want one!
Now... I'm off for my nap!
It turns out that we aren't the only ones wondering about a connection between the field turf we play on and the cancer that has affected our teammates. Komo 4 showed a spot on this issue last night. To see the article yourself, and weigh in with your thoughts, visit http://www.komonews.com/news/local/36270449.html I hate to see other soccer players affected by this, but hopefully we can get an investigation going to see what is really going on with this leukemia thing and stop others from getting sick!
Tyler is the first one I heard of considering this possibility and, the more I think about it, the more I agree. I guess he is a genius... Just don't tell him I admitted to that today!
Thanks so much to the friends who passed this article on to us. We'll definitely be following this story! If you check out the story, see if you can figure out which comment was mine. ;)
Monday, December 15, 2008
Tyler has been a little bit down since coming home. He's discouraged that he isn't able to sleep easily and that he isn't feeling better day to day. I'm hopeful that his health will continue to make the great strides he's been making and that he will feel more like himself soon.
At his appointment today, the doctors today said that Tyler is no longer considered neutropenic (the term for having too few neutrophils to fight off infections) and can stop taking some of his antibiotics. I don't have all of the details, but it sounds like he has more white blood cells than he did on Sunday and NONE of them are blast cells. We love it when the leukemia stays well under control!
Please pray that Tyler can be encouraged by his improvements and that he will see a noticeable difference as his body repairs itself.
Sunday, December 14, 2008
Having Tyler at home has definitely brought out my selfish side! I am taking advantage of the snow today and burrowing down at home avoiding any sign of responsibility.
Yesterday we had an appointment at SCCA to touch base about life as an outpatient, but things went pretty well there. Tyler's blood counts actually surpassed our guesses. His Hemtocrit (HCT) was 34%, his Platelets were at 39, and (best of all) his White Blood Cell count was up to 1500 (normal range 4000-11000)! While the neutrophil count wasn't in while we were in the office, I would expect that his neutrophil count has probably climbed to.
I've decided to attribute his fabulous blood counts to the excellent nursing care that he has received over the last 2 days. ;) Today we actually have to make his "dinner" again, but I think I remember all of the steps from our class on Friday night.
Last night, I forgot to take the TPN out of the fridge early in the evening and poor Tyler got a chilled soup for dinner. Tonight I'll plan to have it out by the time I start cooking my dinner, so that it can warm up to room temperature at least.
Tyler has another appointment at SCCA tomorrow for lab work and a clinic visit with our regular team. It will probably be good to see them, although he is nervous about the early morning appointment.
I'm thankful that he is drinking smoothies and apple juice and chicken broth again. His throat pain has diminished considerably, but we still want to take it slowly to allow his stomach time to figure out what to do with all of this exciting new stuff. He's sleeping much of each day to allow his body to heal itself, so his days aren't particulary exciting. But... He is at home, and sleeping in his own bed. There's definitely something to be said for the magic of home!
Friday, December 12, 2008
Finally, the day has come! We sprung Tyler around dinner time today. Thankfully, whatever snow they are promising us held off long enough for us to get him home. LeAnn and Cynthia decorated the house for the holidays as a surprise for Tyler to come in to and it looked beautiful!!
Tyler headed up to bed early tonight, while Andrea and I got a class in how to make his dinner each night and how to use the IV pump. So now we are highly experienced nurses. ;) We'll show you a little bit more about his pumps later. For now, you can rest assured that Tyler is home for the holidays!
I'm off to join him soon, since his TPN pump will beep at us about 8 tomorrow morning. Tomorrow we travel back to the SCCA for outpatient clinics again.
Thank you, from the bottom of our hearts, for sticking with us along this journey. We so appreciate the prayers for Tyler's healing and my strength and for our ability to come home.
Thursday, December 11, 2008
Mike e-mailed me today after reading Wednesday's post, "Generalized Signs of a Blood Cancer". He says that your doctor may not automatically test your blood for your white blood cell level, so if you are worried or are experiencing any of the symptoms we listed, you should ask him to run a CBC (Complete Blood Count) on your blood. That will give them the breakdown of the components of your blood and identify any areas that might be out balance.
Thanks, Mike, for that suggestion!
The preparations for Tyler's return home continue. Today he was visited by almost every specialist under the sun to evaluate his preparedness and help him transition to his time at home. While Tyler is understandably nervous about leaving the security of the hospital (understandable because he knows his wife and his mother will be his primary nurses while he is at home), I am over the moon!
He will continue to have some IV support from home, but it sounds to me like it will be much less support than he receives here. During the day, he is supposed to try to have small sips and small bites every few hours. As they cut back on his TPN (IV nutrition), I expect that his hunger reflex will kick in again. And, as his throat heals a little bit more each day, I expect that he will enjoy eating and drinking again.
I think that a few quiet days at home will do wonders for both of our spirits. I actually spent a few hours at home on Tuesday evening and then slept in my own bed that night and I definitely felt rejuvenated the next day. It's strange to think how much we are creatures of habit, but I definitely see my rut when I've been forced out of it by a change in circumstance. Silly me... I'm dying to get back into my rut because it was such a comforting routine for day to day living.
Tyler will resume his visits to the outpatient clinic at SCCA, where they will monitor his health for any changes. We've seen many faces in the halls here as we all try to circle the halls for our daily exercise, and I look forward to seeing some of those faces again at SCCA and hearing about their successes since we last saw them. I do kind of wonder if we will recognize some of them as their hair begins to grow back and their bodies climb back towards healthy and normal functioning.
Wednesday, December 10, 2008
I had a class to teach at work today, so I spent the day earning our daily bread. While I was gone, the hospital staff apparently decided that they wanted Tyler's bed back sooner, rather than later. A giant flurry of activity took place at UWMC, most of which was focused on getting Tyler out of here by the beginning of next week.
Now I have to find time between now and Monday to learn how to administer Tyler's IV from home, as he will continue to get IV support in the form of antibiotics and TPN (his liquid nutrition). I guess I'll have a fallback career as a nurse after this is all done....
We do a have a small request about the news that Tyler is breaking out of here... Please hold the applause (and calls and e-mails to him directly) for just a few days so that he can focus on healing and preparing to transition home. However, the wedding e-mail address that you have if you subscribe to our e-mail distribution is one that I check and I'm happy to celebrate with anyone who wants to! ;)
As for test results, Tyler tells me his WBC was 320, but his neutrophils climbed up to 50 today! That's definitely movement in the right direction.
Many thanks for the prayers for his healing! It seems like we're getting some answers this week!
When Tyler was first diagnosed, we saw a poster in the hospital that outlined 7 signs of a blood cancer. Tyler had been experiencing 5 of the 7 signs for some time, but he was attributing them to getting older. If we had known what to look for, we could have gotten him in to see a doctor even earlier.
In my conversation with Hans and Cynthia over the weekend, we discussed this same thing. "If I had known that these puzzle pieces are assembled into something called cancer, I would I have gone to the doctor much earlier...." With that in mind, I wanted to share a list of some things to watch out for. Many of these symptoms can exist without cancer or with other types of cancer. Just use them as a hint to get some blood work and a physical. This list is taken from the Online Cancer Guide.
The leukemia symptoms or blood cancer symptoms depend on the stage of the cancer meaning how much and how far the cancer has grown. Each type of leukemia has its own symptoms. But some of the general leukemia symptoms or blood cancer symptoms are as follows:
- Feeling tired or weakness and fatigue.
- Experiencing a bodily discomfort which is malaise
- Reduced exercise tolerance
- Loss of appetite or not feeling hungry
- Weight loss
- Pain in the bones and joints
- Infection and fever
- Night sweats.
- Abdominal pain or "fullness"
- Enlarged spleen, lymph nodes, and liver
- Frequent or unusual infections.
- Swelling in the belly or pain on the left side of the belly or in the left shoulder from a swollen spleen.
- Swollen lymph nodes in the armpit, neck, or groin.
For Tyler, the most obvious symptoms were:
1. Night Sweats -- he would wake up in the middle of the night drenched in sweat. It was so bad that he often had to change t-shirts in the middle of the night.
2. Weakness and Fatigue -- Our doctor asked how long Tyler had been feeling "not well" and when he last felt "normal". Tyler said it had been at least a year.
3. Reduced Exercise Tolerance -- This is the one that had me pushing for a doctor's visit even before diagnosis. After playing soccer, Tyler would experience racking chills and nausea. The chills were really bad and definitely NOT NORMAL and the nausea was new for him.
4. Frequent or unusual infections -- the kicker for Tyler was the respiratory infection he got right before the wedding. He classified it as the sickest he had ever been. It turned out to be a very deep bronchitis or pneumonia and it took IV antibiotics to get him healthy again.
5. Headaches -- Tyler had more than his normal amount of headaches.
He also had a swollen spleen, although we didn't catch that before diagnosis.
I worry about my friends and teammates more now, than I have over the past two years since Tyler's diagnosis. The odds are just too unusual that two close friends would be diagnosed with the exact same disease within 2 years of each other. With that in mind, we decided to post some of the symptoms that we went through. If you are experiencing these symptoms, please see your doctor. We hope it is nothing more than hypochondria, but it doesn't hurt to take advantage of their expertise on this one.
Tuesday, December 9, 2008
…just a friendly reminder that with the Holiday Season approaching quickly, everyone becomes very busy, blood donations decrease and the need for blood increases so please remember to Give the Gift of Life!!!
WSIPC Parking Lot, 2121 W Casino Rd, Everett, WA
Wednesday, December 17th
9:00 am to 12:00 pm
PLEASE CLICK ON THIS LINK TO SIGN UP ONLINE: http://www.psbc.org/programs/drive.asp?URL=1009
*If you donated on or before October 22, 2008 you are eligible! For eligibility questions please contact Puget Sound Blood Center Clinical Program at ClinicalProgram@psbc.org
If you have never donated before or feel a little “squeamish” about it, why not give it a try at least this one time? Your donation could actually save 3 lives — what could be better than that?
Tyler's blood counts today showed continued improvement!
White Blood Cells (WBC): 360
Neutrophils (ANC): Still pending
Hematocrit (HCT): 29 (Shows how anemic Tyler is and whether or not he needs more red blood cells to carry oxygen)
Platelets (PLT): 15 (Shows Tyler's ability to clot bleeding)
He has also started eating a popsicle type item once per day over the last few days. I'm excited that he is able to eat the popsicles and actually seems to be enjoying that.
Although we initially expected the bone marrow and lumbar puncture tests to take place today, they will be delayed until Tyler's counts have improved a little bit more. The doctor actually told us that they think they can schedule those as outpatient tests for us. That suggests to me that we might get to move home soon!!
Sunday, December 7, 2008
Tyler's WBC was up to 270 today and his platelets held at 15! These are great signs that his body's bloodmaking ability is coming back. The medical staff tells us that the white blood cells are typically the first to return, but the red blood and platelets follow shortly afterwards.
Saturday, December 6, 2008
Friday, December 5, 2008
These are our thoughts of things to think about when diagnosed with leukemia, although many of these would apply to any serious illness:
1. Visit the Newly Diagnosed section of the Leukemia and Lymphoma Society website: http://www.leukemia-lymphoma.org/all_page?item_id=4221 They have checklists and information aimed at helping people in your shoes.
2. Find an oncologist who really listens to you and explains things to you in English. Then make sure you like his nurse, because you spend a lot of time with the oncology nurses!
3. Likely treatment that you would go on for leukemia are Hydrea (Hydroxurea) and Gleevec (for CML) or Induction Therapy (Cytarabine or Ara-C) (for AML or ALL). Tyler's been through both, so we can answer any questions you have about our experiences on those medications.
4. Take your medications carefully. Our doctors say that about 50% of people don't take the medication as prescribed, but it can make a big difference in the state of your disease.
5. Avoid any sports with a risk for contact until the doctor tells you your spleen is normal
6. Stay healthy otherwise - diet, exercise, adequate sleep.
7. Have someone other than each other that you can talk to. Sometimes it is easier to share your fears and frustrations with someone other than your partner.
8. Let family and friends support you. It takes a bunch of weight of your shoulders AND theirs! In fact, it sometimes is good to have a mental list of the things that others can do because many will ask and want to help in any way they can.
9. Remember that some people out there might be uncomfortable hearing about your illness. It's nothing personal; it's just that they have their own issues.
10. We recommend a blog as a central way to communicate to those who want to know what is going on. Ours has been an incredible blessing to us and our loved ones both. If you don't want a blog, you might look itno CaringBridge sites.
11. Go together to all of the doctor appointments. Two pairs of ears hear better than one pair.
12. Apply for FMLA at both jobs, so that you can go to doctor's appointments without risking your job in any way.
13. Resolve any non-mortgage debt you have as quickly as you can, so that you don't have any extra financial worries as you fight your illness.
14. Take the drugs if getting a bone marrow aspiration or biopsy. Tyler had 2 bone marrow aspirations before he started getting conscious sedation and he still remembers how much they can hurt.
15. Have hope that your treatment will work. Oftentimes our minds can will our bodies to work or not, based on our mood.
16. Cry over the disappointments for a day and then get up and fight again.
17. Live every moment and celebrate every day together!
We know that many others have faced similar challenges and welcome you to add your own comments about your first steps for dealing with a diagnosis like this.
Tyler and I have been reeling from shock since we first heard that one of our closest friends was also diagnosed with leukemia this week. Many of you who attended the auction or donated stuff to the auction will remember our friends, Hans and Cynthia, who put so much time and effort in to the auction effort and are responsible for much of its success. Both were part of our wedding party and we consider them some of the finest people we have ever met.
On Wednesday, Hans was diagnosed with leukemia too.
We cry for them because we know how scary the initial diagnosis can be. You don't know ANYTHING really except that you have cancer. Thankfully, Hans was able to get in to see some oncologists on Thursday and now knows that he has also been diagnosed with CML and he will be starting out with Gleevec. As we learned on our journey, leukemia (and specifically chronic myelogenous leukemia or CML) has been one of the biggest breakthrough areas in cancer treatment. Gleevec was approved about 2001 and has allowed many, many people to achieve remission without all of the nasty side effects that you associate with "chemo" and "cancer". We pray that Hans will have more success with Gleevec than Tyler did. I suspect that Tyler had gone too long with the disease in his system before beginning treatment, which is why it ultimately stopped working for him. With luck, Hans will respond and get into remission within the first 6 months and not have to travel the same path we have.
Our minds are puzzled however, that we have 3 men on our soccer team who have dealt with a blood cancer over the last 5 years. The odds of getting a blood cancer are not that high, but to have 3 members of our 12 person soccer team seems astronomical. So, forgive me if I beg, but... please go get a physical (with blood work) this month! My only thought is that there must be something environmental (Tyler's pick is the field turf we all play on) that we have all encountered that caused our cells to reproduce poorly. While I don't want anyone else to be diagnosed with cancer, we all know that early diagnosis of a disease is the best thing you can do to improve your chances of beating that disease. So, go to the doctor at least once per year and get your systems checked out, regardless of whether or not you feel healthy.
Thursday, December 4, 2008
Today, the doctors tell us that Tyler actually had a hint of White Blood Cells. While they still weren't the neutrophils that we have been watching for, they are a good sign that his body is producing new blood.
For those of you that are numbers geeks like us, Tyler had approximately 150 white blood cells compared to the normal range of 4,000-11,000 for a healthy individual. We hope to see continued improvement (and some variety in the types of WBC they find).
Tuesday, December 2, 2008
I was talking to a friend yesterday and he asked if Tyler would be able to swallow a milkshake or similar item. This has actually been a frequent suggestion from friends and loved ones, so I thought I should address it. If Tyler could swallow something of a milkshake quality, we could keep him adequately fed at home. Even before his throat pain, I was the queen of smoothies and I've only gotten better at making nutritious (and calorie filled) smoothies.
The trouble with that is that Tyler is not eating or drinking ANYTHING. Anytime he swallows something, even his own saliva, he has a sharp pain in his throat. He rates his non-swallowing pain as a 3 (on a scale of 1 to 10). When he swallows, the pain typically jumps up to the 5 to 7 range. Consequently he stopped swallowing anything, except the few medicines that he has to get down, at the end of October. Think of how many times per day you swallow the saliva that has formed in your mouth. Tyler spits it out, rather than suffer through the pain of swallowing.
The few times he has attempted to swallow medications or the chicken broth he tried yesterday, he loads up on the pain medication and still suffers as he swallows. Nothing completely removes the ouch.
An added complication is that, with the exception of the week between radiation and the start of the chemo where he was starting to feel better, Tyler has not eaten anything in about a month and a half. He had some soup and canned peaches and ice cream during that one week where he was starting to eat, but that isn't much for your stomach to process. So, in addition to the throat pain, he has to deal with the fact that his stomach is likely to rebel against anything he eats because it isn't used to receiving input.
It's a tough process and very discouraging for him. We continue to hope that his neutrophil count will pick up and he will start to feel better. We've got big plans for the next few weeks -- a Christmas Dinner with friends this week and a wedding for a family member next week -- that we would like to participate in if we can get out of the hospital and start building up strength again.
That's just a little peek into the side effects that Tyler faces and the reason that we are still stuck at UWMC.
Sunday, November 30, 2008
No new updates to Tyler's health. We are just waiting for his throat to repair so that he can get back to eating and drinking. His white blood count was still at 0 this morning, so he doesn't have enough neutrophils to repair the damage done during chemo and radiation. Our next scheduled "appointment" is on Wednesday December 10th (or so) when Tyler will get another bone marrow aspiration and another lumbar puncture.
In the meantime, Tyler is trying to limit his speaking (we're learning sign language) and keeping his mouth and throat moist. We'll post more when we know more.
Saturday, November 29, 2008
I just finished reading The Choice by Nicholas Sparks and have finally stopped crying over an incredibly moving story. One of the reasons that I was so moved by the story is that it discusses the importance of a Living Will. Tyler and I have been talking about all of the paperwork we need to finalize before we get to the really tough parts of his treatment, but it wasn't something I would have thought about before he got sick. I assume many of you are the same way.
While it is incredibly difficult to face the thought of injury or death, it is essential that you talk to your loved ones about your preferences. In the state of Washington, you can even register your preferences online at http://www.doh.wa.gov/livingwill/. If you haven't already done so, I urge you to complete your own Living Will. Talk to your family about what your preferences are and why you feel that way. Make sure you consider how you would really feel if the situation arose that you needed to address your living will. Some of us might actually have to follow these guidelines...
Wednesday, November 26, 2008
Many people have asked me if I am staying with Tyler while he is in the hospital, so I thought I would take a quick second to show you my home away from home. Tyler's room (a private room) comes equipped with a chair that actually converts into a bed for any overnight guests. Each night, I convert my chair (pictured on the left) into a bed (pictured on the right). I have access to sheets and pillows from their linen service, but I actually cover the bed with two blankets that we were given so that I don't freeze to death at night. The chair/bed seems to be located at the end of an arctic wind tunnel. Tyler's bed doesn't seem to receive any of the room's air conditioning, so we have it on at full blast much of the time. I've often thought we should switch places to get the right temperature for each.
They also have a "family room" where we can prepare meals, watch TV, recharge, relax, bathe, etc. It's easy to see that they have considered long term patients and long term caregivers' needs. I go home occasionally to pick up clean clothes or more food or just get an uninterrupted night of sleep, but most nights I am with Tyler. We have fallen into a comfortable rhythm of wake time and sleep time in the hospital, although we seem to act more like farmers here (going to sleep as soon as darkness falls). Vitals are checked every 4 hours, so we get brief interruptions at 8pm, midnight, and 4am. Thankfully the nights have been quieter since we added the request to group the nighttime processes together.
Tyler's family has been wonderful about offering to stay the night with Tyler, so that I can get out for a short time. Sadly, I'm quite possessive of his time and unwilling to share him very often. Hopefully they don't take it personally that I seem to hog all of Tyler's time! :)
That's just a little peek into the caregiver side of our stay at UWMC.
Happy Thanksgiving to all! We wish you an abundance of turkey, mashed potatoes, football, family and friends to celebrate the holidays!!
Tyler just let me know the results of the tests from yesterday and I know many others have been waiting to hear this with us.
0 signs of leukemia in his bone marrow
0 signs of leukemia in his spinal fluid
Hallelujah! It appears the Induction Therapy worked wonders and Tyler is beginning to recover from the side effects. Saturday is supposed to be our target for improvement, so we're hoping that he might be able to start eating sometime over the weekend. I've got lots to be thankful for this year!
Tuesday, November 25, 2008
Spend the day after Thanksgiving at home (hopefully sleeping in) by shopping online at Amazon's Black Friday sales.
The Bledsoe Battle fund earns a percentage of your purchases for all purchases made through this link. Our thanks for your support!
My father-in-law shared the following thought with us and it moved me enough to share it with you as well:
God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.
Today is the big day for Tyler's Day 14 tests. He had a bone marrow test scheduled this morning at 11am and a lumbar puncture scheduled at 1pm. The marrow test started as scheduled and they got a great bone chip from Tyler's pelvic bone for the biopsy portion. Unfortunately, when they got to the bone marrow aspiration (where the liquid marrow is drawn), they just couldn't get any to flow. They tell us this is not entirely unusual for post-chemo patients, but I was disappointed that they couldn't get that portion of the test complete. They tell us they will get enough information from the samples they got to determine if the cytarabine worked or not. The next bone marrow will be on Day 28.
The lumbar puncture has been delayed to try to finagle Tyler's platelet count up. The test requires a platelet level of 50 and Tyler has been hovering around 5-15 for awhile now. Added to that, they are not seeing much of an increase with each bag of platelets that he receives. They decided to test him to see if he has developed antibodies to blood products.
Anyways... They gave him a bag of platelets yesterday and 3 units today. After the 2nd bag, his platelet count was up to 33. After the 3rd bag, his platelet count was still at 33, so we're expecting the radiology folks to balk at doing the procedure today. He's got his 4th (and final) unit of the day hanging now so that the platelets can be running while they go into the procedure, but that is our last shot for today.
Hooray! They just announced that they will take him, despite the low platelet count. Hopefully they can get his spinal fluid to flow today. It seems to be a problem for them to get a good sample.
Sunday, November 23, 2008
My family has set a tradition of celebrating Thanksgiving together the Saturday before the real holiday. It's nice not to worry about conflicts with the other side of our family and to have a reason to get together with my family. This year was a little bit different than previous years because one cousin gave birth to a young boy a few weeks ago, another cousin gave birth to a little girl on Wednesday (see me holding Audrie at left), my Grandmother had surgery on Thursday, and my husband is in the hospital recovering from chemotherapy. Nevertheless, several of us gathered and discovered that one of the things we are most thankful for is to be a part of the same family. As many of you will likely be spending time with family this holiday, I hope that you find as much joy in spending time with your family as I find spending time with mine.
Tyler continues to fight throat pain, but we are hoping that this week wil begin the slow climb up. Tyler essentially has no blood making ability right now. He's got no white blood cells, almost no platelets or red blood cells. He's been getting transfusions each day to get his platelets and red blood cell levels up to a minimal level. The doctor says that a typical patient might start getting better on about Day 17 after the start of this induction therapy. We are currently at Day 11, so I am hoping to see some improvement over this next week.
He is scheduled for both a bone marrow aspiration and lumbar puncture on Tuesday. If those tests show that the first round of cytarabine had a good result, than they will likely continue with one more round of this induction therapy before proceeding to transplant in January. While I do not wish another round of this chemo and mucositis on Tyler, I do hope that we have finally found the right treatment path to get Tyler healthy again.
Tyler and I thank all of the many hands that have helped us keep our lives going, the many friends who send e-mails and comments to encourage and comfort us, and we wish you the best of holidays!
Wednesday, November 19, 2008
Tyler has started to feel the effects of the chemotherapy. His throat is sore and swallowing is painful again. He is disappointed because he had such a good day yesterday and was excited about eating again. Today, the pain was up considerably so we requested a PCA again. This will allow Tyler to administer his own medication, and hopefully, be much more comfortable through this stretch.
He switched from Morphine to something called Hydromorphone, which is supposed to be a little stronger and make him a little drowsy. After 3 rough nights, "a little drowsy" meant that Tyler slept all day. I'm thankful that he reports his pain level has dropped from a 7 this morning to a 3 this evening. Plus, the doctor thought this bout of mucositis might not last as long as the one from radiation did. I hope that is the case, because Tyler and I could use a few days at home, and we can't go home until he can eat and drink.
The doctors told us this morning that they found no evidence of leukemia blasts in Tyler's blood, so that was definitely cause for celebration. Sadly, Tyler wasn't in the mood to party because of the pain and his morning test.
Because of the foot drop problem Tyler has experienced, the neurologists suggested a nerve conduction study to more accurately identify the cause of the problem. Tyler described the test as torture, so I think it isn't much fun to endure. I wasn't with Tyler during the test, but he reports they spent an hour shocking him (electrical stimulation) and then another 30 minutes poking him with needles. He wasn't feeling good at the beginning and this just made him morning worse. After the test, the doctors believe Tyler's foot drop is the result of pinching or damaging a nerve while sleeping. They told him today that it will likely take 6 months (extended from the original 2-3 months) to heal -- if it heals at all. I know they have to say that, but I hate hearing that things might not go well. Tyler will definitely miss some of his activities if the foot does not eventually heal, so I am hoping that it is just a temporary injury.
The night nurse is hanging Tyler's medicines now, so I guess I had better get ready for bed myself. If we go to bed about 9, we sometimes can get 6-8 hours of sleep. It's a crazy schedule around here, but it is definitely improving my ability to sleep through things.
Monday, November 17, 2008
Tyler had his final dose (for the time being) of Cytarabine this morning. Thankfully, side effects are still pretty minimal so far. His throat is starting to get a little bit sore, but we haven't hit major pain yet. Probably the most difficult part of this weekend was just getting enough sleep. Tyler's having trouble finding a comfortable position in the hospital bed. I'll be bringing some of the pillows from home back with me, since he has broken all of those in appropriately by now.
What is most frustrating for me is that he just drifts off to sleep and someone will come in and need something from him, or the IV will start beeping an alarm at us. I wish we could just let him sleep for an hour or two, once he finally dozes off, especially after he had 2 bad nights in a row. Usually the afternoons are quieter than the mornings, so he is trying to get a brief nap in now.
Phew! His cell phone just rang, so I was diving across the room to hit the silence key. I got lucky and got to it after only 2 rings. It turns out that the UWMC was calling us to make an appointment for a test. I suggested that they contact Tyler's nursing staff since he is still inpatient. That seems easiest for now.
Now the IV has started beeping. I think it just isn't our day to find quiet time.
Anyways... Dr O'Meara had good news for us this morning. Although today's blood test results weren't yet in, yesterday's results showed that the blast count in Tyler's blood were down to less than 1%. That's great news and shows that the first 4 doses of chemo have done their job. We hope that last night's results show him down to 0% in the blood. They will test his marrow and spinal fluid next week, for the more sensitive tests. Hopefully they will also show the same kind of improvement as the blood tests.
The side effects are expected to worsen (if they are going to) over the next week, so I suspect that will be the worst part of the month for Tyler. I pray that they will be far easier than what he dealt with for the radiation.
My "son" is staying with Tyler tonight, so I'm headed home to try to catch up on sleep myself.
Friday, November 14, 2008
Although I doubt it will last, today was a good day. Tyler was experiencing no effects yet from his treatment, his throat was feeling a little better, and he said he was a little bit hungry. All in all, he seemed to be in pretty good spirits, so I am VERY thankful that he survived the first 2 doses so far.
He gets dose 3 tonight and dose 4 in the morning. We expect the majority of the complications to hit next Wednesday or so, with the mucositis being the one I most fear. But Tyler was feeling good today and Dr O'Meara thought it was possible that it might just be due to the fact that we are treating his leukemia and whipping it into shape.
Thank you so much for sending laughter and encouragement our way! Let's hope this next dose gets the job done without many new side effects.
Wednesday, November 12, 2008
After delaying to see if they could get his throat to heal up a little bit, the doctors have come to the conclusion that they need to start their "induction" today. Beginning sometime tonight, they will give Tyler a drug called Cytarabine that is much more like the drugs you think about when you hear the term "chemotherapy". Their goal is to poison any fast growing cells in his body in hopes of killing off these cancerous cells.
The drug will infuse over a period of 3 hours. 12 hours later, they will give a 2nd dose. Then they will let his body rest for 24 hours before giving 2 doses on Friday and 2 final doses on Sunday. The side effects are supposed to be nausea, vomiting, mucositis, rash, fevers, and low blood counts. 7-14 days after we start, his blood counts will likely drop down to zero and he will be getting frequent transfusions of blood from the generous souls who keep our blood bank stocked.
I'm nervous for him to begin this next phase of treatment and wish that I had a guarantee that it will be the best path for us to travel. It seems to me that he regrets all of the previous treatments, since we now know they didn't work. While we couldn't have predicted the outcome at the time we started down each path along our journey, it would sure be nice to have some assurances we could trust.
Finally, please pray that he can finally be in the 1% of the population that has a good result. We get tired of doctors telling us that they don't know exactly why his disease won't behave the way it should. It would be nice if they told us that they don't know why, but he seems to have no adverse reaction to this treatment. While I doubt that dream will come true, we still appreciate the love and support of the many people encouraging us through this journey. We know that everyone has "stuff" in their lives, which makes it all the more amazing that you can show so much love to another at a time when they so deparately need it.
Pray, also, that his parents and I all stay healthy and are able to support Tyler fully. It's coming in to the season of sick and I can "ill" afford to lose several days by my husband's side as I fight a silly cold.
Much love to you all and many thanks for the encouragement you send our way,
Monday, November 10, 2008
The GI doctor says that he sees a sore at the base of Tyler's throat and recommended that Tyler swallow nothing other than liquids for 1 week. I don't know if they can find a way to keep his leukemia under control without the Tasigna or Hydrea pills he has been taking, but I sincerely hope they can find something that will work in IV form without adding too much toxicity to his body.
On a lighter note, I must admit that I enjoy seeing Tyler sedated. The GI doctor came out to talk to us and Tyler fell asleep and started snoring while the doctor was talking. Then he woke up and asked the doctor what happened (just after the doctor had finished his explanation to me). Then he asked me at least a half dozen times what the result was. He should wake up completely over the next hour and will start remembering things then. But I can tell him stories about his wild behavior in the meantime. ;)
After several weeks of agonizing each time he swallows his pills, Tyler has finally been scheduled for a GI Consult this afternoon. They will put a scope down his throat and look for ulcers or infections along his esophagus. This gives us such peace of mind, as the pill swallowing has lingered as the most painful thing left over from radiation. The doctors really feel that Ty's throat should have improved by now.
He's also scheduled for a lumbar puncture with chemo injection this morning, so we'll start that part of the treatment at least. Yesterday's appointment with the doctors sounded like they wanted to wait until Tyler's throat has cleared up a little bit before starting with the rest of his chemo therapy, but we should get a better idea of that today.
His left foot has started tingling itself awake again, so we are excited that the numbness seems to be receding and that he is able to move his big toe a little bit again. Tyler is so good about doing his exercises that he is bound to see continued improvement as the nerves heal themselves.
Tyler got 2 bags of platelets in the wee hours of the morning and is getting one more bag before his LP today. Then, after lunch, we'll see the GI doctors and get 2 units of Red Blood Cells. It will be a busy day for us with all of the appointments to juggle, but I'm just so relieved they've squeezed him in for the throat scope.
Sunday, November 9, 2008
This morning the doctor who is covering our case for the weekend met me for the first time. After Tyler introduced me as his wife, the doctor said he was surprised to see how petite I was after meeting my son yesterday.
Ummm... My brother-in-law (who is a few years OLDER than me) stayed the night on Friday night and was apparently mistaken for my son. There is something to be said for aging well, right...? I'm sure the doctor regretted that once Tyler mentioned that Gump was actually his brother and not his son. OOPS!
Saturday, November 8, 2008
Annie over at Living With CML posted the following information about joining the National Marrow Donor Program! If you missed signing up when we last posted how you can help save someone's life, please consider joining now. If you have already joined the registry, please consider sharing this message with the others in your life. It's free to join in November and would be such a minor thing for most of us...
November is National Marrow Awareness Month. Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.
This is your chance to join for FREE while funding remains.
It's easy to join:
1. Confirm you meet basic donor guidelines.
2. Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
3. Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.
NOTE: When filling out the application, it will ask you for a credit card number and it will still mention the $52 fee normally charged. Ignore the $52 fee and don't enter any credit card information. On the final page it will show a $52 fee and a $52 coupon making your total $0.
JOIN BY CLICKING HERE
For more info on what joining is all about, CLICK HERE!
Wednesday, November 5, 2008
So the doctors from SCCA and UWMC had a conference about Tyler today and came up with a new plan of action. They want to put Tyler through Acute Leukemia Induction Therapy. This involves giving him very high doses of chemotherapy for 7 days, then recovering from that for about 3 weeks. The doctors anticipate 2 rounds of chemo, so we suspect Tyler will be in the hospital for the next two months as endures the chemo and recovers from its effects.
The timing and type of transplant are uncertain. They want to see how Ty responds to the chemo and, if they can get him into remission, they will want to move quickly with the transplant. Thankfully, they still think that Scott can be the donor for other types of transplant protocols too. Having a famiy member as a donor enables them to move forward with the transplant at any time.
Their goal is to start the chemo on Monday, so we are supposed to spend the time until then getting Tyler as strong as possible. Eating and pill taking are still challenges, but it is important that we keep working on those tasks to get his body's strength up. He didn't get his IV nutrition today, as our goal has been to get him eating again in preparation to go home. Then when he ordered breakfast, they told him he couldn't have anything by mouth from 9am until 2pm. This kind of interrupted his plans for a good healthy breakfast to start the day. But he got his sedation for the bone marrow aspiration and biopsy today, which was very important. I hadn't realized that he was getting a biopsy today and it isn't something he has gotten before.
While we are disappointed with the news that Tyler will have to undergo two months of bad chemo, I am thankful that we have a new plan and I pray that this is the one that works.
Tuesday, November 4, 2008
We finally got the results back from yesterday's LP and the news was not good. They tell us that his spinal fluid had 4% blasts. They'll be discussing options tomorrow and will fill us in tomorrow. Tyler will also have to get a bone marrow aspiration tomorrow. One of the concerns the doctors have is that Tyler's disease is evolving, so they want to look in his bone marrow to see how it compares to previous marrow extractions.
Rocky is on TV today and we just watched the scene where Rocky runs to the top of the Museum steps. The music is so hopeful and it makes me think of the fight that Tyler seems have against this disease. We can't figure out WHAT is going on with it!
Bad news again today, but hopefully the plan they come up with tomorrow will be the one that works. For now, we suspect the transplant is on hold.
Sunday, November 2, 2008
Its day 6 in the hospital here, and the staff have been wonderful. They are doing their absolute best to get me through this horrible time. Ive experienced things this week that I wish to never repeat, although it seems likely I will. Pains have been awful, inability to do things has been disconcerting beyond all I imagined, but more than anything the overall discomfort, and doubt have really made this week miserable. I feel like Im getting better, but there are still things Im not doing well.....mainly swallowing pills. This has most likely contributed greatly into a climbing WBC count.
I have been receiving numerous emails, comments on the blog, texts, and phone calls.......and I appreciate every single one of them! I do apologize if I havnt responded or dont respond, but getting through each day is about all I can handle right now. Right now, I am trying to enjoy some soup, and apple juice and it seems to be going well. I think I will get back to that now, but just wanted everyone to know that I love you all very much!
The doctors have informed us that Tyler's WBC is climbing (from 20 to 35 since yesterday), so he really needs to be taking his Tasigna regularly again. Unfortunately, the Tasigna pills are large and Tyler has to take 4 pills per day. They've also added 12 Hydrea (to quickly bring his WBC down to a normal range of 4-11), and a few others. It's very, very painful still for Tyler to swallow the pills. He's doing okay with the small ones or the ones that can be crushed up and sprinkled on a spoonful of something easy to eat, but the Tasigna is refusing to cooperate.
We hope that his throat continues to cooperate and make swallowing an easier task, but in the meantime we are wishing for more IV forms of the various medicines he needs to take.
The new LP is scheduled for tomorrow, so we are also praying that his spinal fluid will FINALLY be free and clear of Leukemia. In the meantime, you will find us at the UW hospital. E-mails remain the best way to contact us, as we can check them any time of the day. We get so many interruptions day and night, that it is difficult to get enough rest in a 24 hour period. E-mails allow us to hear from loved one when we are feeling good and respond to you at that time. Thanks so much for all of the encouragement!
Friday, October 31, 2008
It seems like we have good ups and then some bad downs with this disease. Today, Tyler tried vanilla pudding for breakfast and ate the whole thing without any problems. He says it tasted delicious on his tongue, so it was a good place to start. We were both thrilled with his progress and trying to figure out what he should try to eat next.
Then we met with our doctors here and they raised some concerns about a numbness that Tyler has been feeling in his foot since Wednesday. The numbness itself wasn't entirely concerning, but the fact that Tyler has lost ability to pull his toes up on the left side is concerning. Tyler is a strong man, with good muscle tone, so he should be able to exert some pressure against a hand that is pushing his foot down (imagine pulling your foot up in the opposite direction you would use on your gas pedal -- heel on the floor, pulling your toes up). Unfortunately, that wasn't happening today.
The doctors said that they don't know what has caused this, so they want a neurologist to take a look and help determine the root cause of this problem. They say the numbness/nerve damage could be caused by the radiation, or it could be caused by the leukemia itself. They will take what they learn from the neurologist and from the Brain MRI (we hope both are happening today) and try to figure out why Tyler's disease is such a challenge.
We are discouraged because the doctor said that it is possible that Tyler's CML is so resistant to all of the nasty things they have thrown at it, that we might not be able to get Tyler eligible for ANY transplant. I have come to believe that this is Tyler's best hope, so it is heart wrenching to hear we might not be able to travel this path.
In addition, the doctor says that Ty really needs to start taking his Tasigna again, as they are already seeing blasts (leukemia cells) in his blood tests.
In the meantime, I try to remain hopeful that we will find a cure that works for Tyler and that his spirits don't drag too low in light of the news we got today. All in all, it isn't the birthday I was hoping he would have today.
Now that Tyler is feeling better, he's up checking e-mails and fantasy stats. It gives us both peace of mind to see him back to normal activities. He's out walking the halls again now. His goal is to walk a mile today, and he looks like he is going to make it. We walked this morning at about 5am, after one of our wakeup calls, so he got 3 laps in then.
You might notice that he looks slightly different today. Scott shaved the rest of Tyler's head, so that we don't have to deal with so many little pieces of hair everywhere. We were getting tired of changing pillowcases every couple of hours to protect Ty from breathing in the little pieces. It doesn't look too bad, does it?
We look out our window at a rainy northwest day and hope that you are all enjoying Halloween with costumes and candy!
Sorry for not posting yesterday, but it was a really busy day. Tyler woke up feeling significantly improved. His energy was up again, he barely used the morphine at all (1 pump all morning), and his voice was back. He was so relieved that the Ear, Nose, and Throat guys had taken a look at his airway and confirmed that he had a good clear breathing passage, although they saw lots of inflammation and lots of mucous clogging things up for his swallowing. The steroids they prescribed reduced the swelling in his throat and Tyler was finally anticipating swallowing real food again.
Since he awoke feeling so good, we allowed a few visitors to come in and say hi. He has to be careful still to not talk to much and to keep his mouth and throat moist, but all in all, it was a great day.
He was finally feeling good enough to get up and walk around the hallways, which is an important part of being inpatient. I even saw him practicing "the move" as he walked around the halls. I guess he doesn't want to lose his biggest weapon on the soccer field.
One of our goals for yesterday was to attempt swallowing again. The doctors tell us that thin liquids are actually harder to swallow than thick liquids, so they got us a jello cup to start with. Tyler was able to swallow the jello (8 times), but wasn't able to get the jello all of the way down. It ended up getting lodged in his throat halfway down and then coughed back up. It hurt quite a bit, so we called it good for day 1 of swallowing and plan to try again Friday.
When we met with the doctors, they told us that Tyler's transplant has been pushed back about a week with the delay in the repeated lumbar puncture. We estimate his new transplant date is 12/2. We expect to be at the hospital through Monday's LP, unless Tyler is swallowing nutrition and medicines again. He's been off his Tasigna for a few days, so we need to get him back to that medicine again soon.
Thank you all so much for encouragement while we were struggling earlier in the week. It helps us so much to have e-mails and comments from loved ones.
Wednesday, October 29, 2008
The plan that they have created (since the transplant can not yet proceed) is to have a Brain MRI for Tyler and then another Lumbar Puncture on Monday. The LP is to measure whether or not the cells they saw this week were just the last onery cells dying off. The brain MRI is to investigate WHY none of the treatments have worked yet. Tyler has had several rounds of chemo to his spinal fluid and a heavy dose of radiation that all should have killed off every speck of leukemia. The doctor says they will be looking for a "leukemia lump" in his brain somewhere. I didn't know that leukemia could form a solid tumor, but that sounds like what they are looking for.
All of this makes me wish that we had caught Tyler's leukemia much earlier and maybe had more success as fighting the dang disease!
In the meantime, the doctor expects that we will have several boring days at UW just waiting for tests and for healing. Dr Turtle did mention that Tyler's White Blood Cell count had gone up this morning, so the doctor thinks that Ty's body will start to recover now. It would be a blessing to have his throat return to normal. I bought Tyler a 36-pack of Mountain Dew for his birthday and it would be a crime for me to drink it all without him.
He is swallowing NOTHING these days, so he is unable to take his Tasigna. The doctor thinks that will be okay, but I get worried when they talk about his WBC climbing up and I know Tyler is not on his leukemia meds. It does give me peace of mind to know they are watching him so closely while he is in the hospital. If we had experienced the not-breathing episode last night, I would have been beside myself trying to figure out what to do. It took me long enough to find the nurse's call button as it was....
I'm back to spend the night with Tyler again. It's an interesting way to try to get rest. They wake us up every 4 hours to take vitals. I know that is important, but I weigh that against the importance of sleep. Maybe I should take ear plugs tonight??
The doctor came in this morning and let us know that the LP results were in. Sadly, they still had signs of leukemia in Tyler's CSF. It was only 0.1% (compared to 16.5% before radiation), but it doesn't meet our goal of completely clear.
The doctors are meeting today to determine what steps we take next. At this point, I would assume the transplant is on hold. He is probably going to end up going through another round of radiation and we were really hoping to avoid that.
We are both very discouraged at the news, but will surely start feeling a little better once we have a new plan in place.
We had a scary moment this morning, as Tyler found himself unable to breathe due to all of the gunk in his throat. It happened about 4:30 this morning, just after his 4am vitals check. He was trying to cough up some of the throat secretions that he has accumulating in his mouth and esophagus, but he just couldn't clear out his throat and he was causing a great deal of pain trying to.
After 5-10 minutes of trying to clear his throat he all of a sudden got much more agitated and asked me to hit his nurse button. A nurse's assistant came in to check on the alarm and she checked Tyler's blood oxygen level. He had 99% for his O2 level, but his heart rate was over 100 beats per minute. Tyler is consistently in the 60's for his heart rate, thanks to a long history of physical activity, so she called his nurse.
When Molly came in, she listened to his wheezing and could see that Tyler was having an extraordinarily hard time clearing his airways. Tyler had Molly look at his throat, where she could see that his uvula is swollen and partially blocking his breathing. She called the doctor, so he could review Tyler's condition. By the time the doctor got to the room, Tyler was beginning to clear out his throat. The doctor did agree to up the morphine dosage per button click, so Tyler is able to get some pain relief from that.
Molly provided the most comfort though. She provided him with some ice water, that he could gargle to "ice" his uvula and throat. Hopefully he can reduce some of the swelling with the gargle.
Tyler finally was able to moisten his mouth and throat enough to dislodge whatever had been blocking his breathing and is resting much more comfortably now. The extra half dose of morphine probably doesn't hurt either. :)
We certainly feel that we owe a great deal to the compassionate and knowledgeable care of nurses like Molly. She did a great job of listening to his rasping and determining what might be the best solution for him tonight.
Tuesday, October 28, 2008
Tyler's night nurse just came in to check on an alarm from his IV (the end of a saline bag) and I was very surprised to find that his nurse tonight is a familiar face to me. Those of you from Vashon will recognize the name Molly McElroy, a classmate of Bonnie's. It is a small, small world some days!
I'm happy that we should get a few minutes to catch up tonight, but it's definitely a strange coincidence! I bribed Molly and Tyler to let me take a picture, so you could see the setup.
At 10:30 on Monday night, Tyler decided he wanted to be admitted to the hospital. The doctor had given us the option earlier in the day, but Tyler thought he might be able to tolerate the pain at home and opted to stay outpatient. Unfortunately, with his inability to take pain medication, he was unable to get any relief. On a scale of 1 to 10, he rated his pain level as a 10.
We finally got checked in and he got a shot of morphine at 2am, but it was a little bit of pain relief and very late in the game. They gave him another shot a few hours later and then, this morning, hooked him up to a PCA of morphine. A PCA is a patient controlled analgesic. Essentially, Tyler now has a button he can press to dispense another dose of morphine. After consistent use for a few hours, he estimated his pain level had finally dropped to 5-6 out of 10. The nurses have explained to us that getting early relief from pain is key to managing chronic pain like this.
We expect Tyler to be in the hospital for a few more days, so please feel free to e-mail him or comment on the blog (he gets copies of all comments made here) if you want to share with him or encourage him. He should have internet access by tonight, so he will be able to get online anytime he is feeling good. The nurses and doctors at UW have definitely explained to him that the symptoms he is experiencing from mucositis and esophagitis are not abnormal for the treatments he has gone through.
Still no update on the lumbar puncture yesterday, but we'll definitely let you all know when we know more. We know a great many people join us in hoping that the results are clear and free and we can proceed with Tyler's transplant.
Monday, October 27, 2008
I hate to see Tyler in such pain, especially as there is absolutely nothing I can do to help. His throat is closed up so tight and causes so much pain that he is not eating or drinking anything. He's hungry and weak, but is unable to get anything down his aggravated throat. He's had less than a cup of milk and juice today. Thankfully he had several cartons of milk yesterday, but he wants to eat and just can't do so.
Tomorrow he will be getting a PICC line installed so that he can get nutrition through an IV. The doctor decided today to hold all of his medication except for 3, 1 of which he can get through IV. Still it is a struggle for him to swallow those giant pills. I think the pill makers might need to think about shrinking some of the pills a bit. When your throat is swollen, the idea of a giant pill is more than one can bear.
We spent our weekend at the SCCA, and then spent more time there today. He's gotten transfusions of both Red Blood Cells and Platelets, as well as some saline to help him hydrate through the esophogitis. He got a unit of platelets on Sunday and two more bags this morning, but still only got to a count of 47. The all-important lumbar puncture requires a minimum of 50 for a platelet count, but our doctors begged and the UW somehow agreed to do the procedure despite the slightly low count. We hope that the CSF they took today will indicate no leukemia at all and we can begin to focus on the next phase of this transplant.
We're back to SCCA for more transfusions tomorrow and I hope that it will be an easier one for both of us. Please pray that I have gentleness and patience as I encourage him to eat something tomorrow. I'm not being a very supportive partner this weekend because I am so worried about him. I need to push less and help more.
Because Tyler has barely eaten in the last 5 days, he is sleeping most of the time right now. With that in mind, we need to ask that phone calls are kept to a minimum for the next several days. We'll continue to post as we are able to, but we appreciate your understanding that it's hard to field phone calls when you are feeling beaten and tired.
Thursday, October 23, 2008
Thankfully, Tyler has only one scheduled radiation treatment left. They tried to schedule a Monday appointment for him and he told them he was done with the whole thing after Friday. I don't blame him... The toxicity has continued to build and he is feeling poorly again today.
One of the side effects that I didn't expect are these huge bouts of hiccups. They are getting more frequent and we can't find anything that seems to trigger them. But... he gets violent hiccups for a few minutes at a time throughout the days now. The nurses and doctors said that it is due to an irritation of the diaphram and is likely a result of the radiation treatments.
Tyler met with the radiation oncology doctor today and she says that his symptoms should begin to improve within the few days after treatment stops. I'm counting down the minutes until he starts to feel better. This is by no means the end of the crappy days, but we're ready for a break for now.
Tyler goes in for a blood test tomorrow and we are kind of expecting that he may need a transfusion. His platelets had dropped from 58 to 38 over the last weekend, so he might continue to drop a little bit lower. He must be over 50 platelets to get his lumbar puncture on Monday, so we are thinking he'll get a transfusion by Monday at the latest. If he dropped below 20, then they will likely give him a transfusion tomorrow too. The biggest risk of low platelets is the risk of bleeding. Platelets are the part of your blood that contribute to clotting and you have to be extra careful not to get hurt if your platelets are low.
The last day of radiation tomorrow, so we are counting the hours. 15 hours from now..., Tyler should be done with this phase!
Wednesday, October 22, 2008
Today I completed my 10th radiation treatment! We have 2 more this week, and then we get to check my spinal fluid on monday. We should know by tuesday whether or not the radiation was effective in clearing my spinal fluid. If its clear, we can proceed with the transplant with its current schedule. If its not clear we will be doing an additional 6 radiation treatments. Ive been having some difficulty the last day and a half swallowing, and thus getting the proper amount of nourishment into my body. Today has been particularly difficult, but we seem to have found some good pain killer and a mouthrinse that should help me out. If I cant get the right amount in, I will need to have some assistance from an IV at SCCA. Things are much better this afternoon than earlier this morning so I am very hopeful.
All of this really makes me appreciate things I had never really thought of and had taken for granted in my life. Being healthy is truly the most important thing anyone can have or aspire to. I never thought that I would encounter pain swallowing or be afraid to eat or drink, but those things have happened during my radiation regimen. I am fortunate to have some great doctors and nurses whom have been able to spend quality time with me discussing my ill effects. Of course I am also extremely fortunate to have amazing caregivers, and moral support, and prayer from all of you! I would be nowhere without all of you! Whenever I think about the auction, and all the great times Ive had in my life it makes me fight even harder than I thought possible.
I mentioned my schedule earlier...........I will spare the daily details, but the transplant date is currently November 25th.
Please take care all and do everything in your power to stay healthy!
Tuesday, October 21, 2008
We are happy to report that we are 75% done with the radiation treatments, but that Tyler is starting to feel more of the cumulative effects from treatment. His throat has been getting thicker, but today was the first day that it pained him to swallow all day long. He is trying an oral rinse tonight, but I'm not sure that it relieves enough of the pain for him. We'll keep trying tomorrow to find a combination that works. If Tyler tells the nurse that the oral rinse isn't working, they will give him something called "Magic Mouth Wash". Sounds like something that you would find at Disneyland Resort, right? Apparently it is a blend of common numbing agents that will help numb up your throat and mouth.
He is also feeling slightly more fatigue than he was before. We are trying to make sure we get 8+ hours of sleep at night and also Tyler takes a nap as often as he can. They attribute the fatigue to the fact that all of your cells are having to repair themselves after they are damaged by the radiation. Extra calorie intake and extra rest were both prescribed before the treatment even started.
After the 3 treatments this week, Tyler will be getting a lumbar puncture on Monday to test whether or not we were sucessful in clearing his CSF. If so, the transplant is on track for the week of Thanksgiving. I'm nervous for the results of his test, but we should know the outcome by the middle of next week.
Our thanks for the prayers, well wishes, notes of encouragement, and help with tasks. We've had more offers of help than we know what to do with and we appreciate you all so much for being willing to help us out. Let's all pray that Tyler's spinal fluid is free and clear of any sign of leukemia.
Tyler's birthday is rapidly approaching and, although we are unlikely to be out and about that day, we want everyone to enjoy Halloween to the fullest! Amazon recently sent me a post that says they have free shipping on orders of $25 or more of select Halloween costumes through October 23rd. You might already be organized for the holiday, but if not we suggest you check out Amazon's option.
Even better then that, Amazon Grocery’s Halloween page is stocked up on all kinds of candy and treats that your trick-or-treaters will love. From now until Oct. 31, save $15 off orders of Nestle and Hershey products of $39 or more. Plus, get free Super Saver Shipping on all orders that total over $25 (after discount). If you have yet to buy your candy, why not buy online, avoid the rush at the stores, and help a friend in the process.
Saturday, October 18, 2008
We are thankful that the radiation gives us a break over the weekend. Tyler's blood was a little bit low, so they asked us to come see them today too. They promised to give Tyler two units of Red Blood in exchange for us paying them a visit. Tyler has been feeling much better and did get two units of red blood on Thursday too, but he had gotten so low that he still had some anemia related side effects.
We actually had a fairly relaxing day there, watching football and sharing the lunch they provided. We went out to dinner at the Keg, using Tyler's birthday coupon, and then watched movies afterwards. Tomorrow, I anticipate NFL all day long in our house. The Bledsoe Football League (our fantasy football league) is going strong, so we have to make sure our teams play their best tomorrow!
Wednesday, October 15, 2008
Tyler said at our doctors' appointments today that, for the first time since the radiation started, he was hungry! It is such a relief that the nausea has faded again and his body has adjusted to the new regimen. He has been eating like crazy today to catch up to what he missed over the last week, so I am feeling much better.
We also got a new transplant schedule today from the folks at SCCA. Tyler's transplant is now scheduled for 11/25, two days before Thanksgiving. Hopefully his lumbar puncture on October 27th will show a leukemia-free CSF and we can proceed with this schedule. If not, we will likely be delayed another 14 days while he suffers through an additional round of chemo.
Assuming the best case scenario, Tyler is now 41.67% done with his radiation treatments. For those of you that wonder about our compulsive need to post numbers every time, rest assured... Tyler is the one that does all of these calculations. I'm always in awe of his mathematical abilities (and I'm a math major from college) because he consistently leaves me in the dust.
Andrea and I got our flu shots today, so that we can take care of Tyler and put him at less risk for illness this fall. I've never had a flu shot before, because I don't really believe the theory that you can accurately predict which strain of illness will be popular 9 months in the future. But... I am a loving wife, so I suffered through this year. The poke actually wasn't that bad and the mail today indicates that my insurance company will reimburse me for that cost.
Tyler can always tell when he is getting low on red blood cells and that proved true again today. He told me yesterday that he expected to need a transfusion and, sure enough, his Hematocrit has dropped to 23%. He's pushed his transfusion off until tomorrow (so he could steal a few hours of golf with Gump today) and will likely be moving around with an extra spring in his step by tomorrow night. The only remaining concern was that he dropped from 27% HCT on Monday to 23% today. That's a steep drop, but not unexplained with the radiation treatments.
His WBC count today was the lowest we have ever seen at .93. The normal range is 4.8-10.0, or something like that. We were happy to see that his blast count was all of the way down at .02%, so I am hopeful that is indicative of positive CSF results in a week and a half.
I think that is most of the exciting news from today. Thanks for the e-mails and comments for the blog! We are touched to hear that people are thinking of us and offering to help. Friends and family make this battle a much easier thing to bear.
Tuesday, October 14, 2008
Today we reached the 33% done mark in our radiation schedule and we had a MUCH better day! The new medicine seems to be working well and we both ate well today.
An added bonus today was a personalized tour from Amber, a nurse at UW. She is the sister of my cousin Aaron's fiance, Heather. Is that confusing or what? As a brief detour... My heartiest congratulations to the recently engaged couple!!
Anyways... Heather and my aunt Jolyn put us in touch with Amber, who offered to give us a tour of the oncology floors at UW. Amber works on the 7th floor, which we have heard is the best in the hospital, and the floor that contains the isolation rooms where Tyler will become a bubble boy.
She showed us the two rooms that they use for isolation and it was much different than I imagined. Essentially, Tyler's room would be covered in plastic but not closed off from the hallways. They put a lead shield in the doorway to keep the radiation from escaping and visitors have to stay on the far side of the hall, but his room is almost like another hospital room in other ways. He will have a nice view and, most importantly, internet access while stuck in there. I plan to IM the guy, since that will actually be easier contact than yelling at him from across the hallway.
What is really strange about the isolation rooms is that you see duct tape everywhere. Every surface is covered with plastic or other covering and taped in place. As Amber explained it, Tyler's radioactivity will ony last 5-10 days. The inanimate objects in the room that he has direct contact with would stay radioactive for months. For that reason, they try to keep him from directly touching anything. The floor is covered, the toilet seat is covered, the hospital gauges on the wall are covered... Even the remote control for the tv is covered in a plastic bag.
She told us that anything that goes into Tyler's room will need to stay in there until he leaves. So when he orders his meals, he should probably avoid ordering fish (unless he wants to smell the remains in his trash for the next week or two).
Amber was so amazingly friendly and made me feel so much better about the time that Tyler will spend inpatient at UW. She introduced us to several members of the staff there, although I will not remember them after just the brief meeting. It did make me feel really confident listening to her after hearing how knowledgeable she was about Tyler's protocol and similar treatments for other patients.
After the tour, we headed down to the basement for Tyler's 4th radiation treatment, which seemed to go fairly quickly today. I was listening to a book on my MP3 player, so I don't actually know how long it took, but it felt quick today.
Tyler was feeling so good today, that he wanted to stop by his work and say "hi". So we put in a brief appearance with the Children's crew and got to catch up with them. It was great to see them and let Tyler explain what is going on. It was clear to me that he is well liked and well respected with the people stopping to say hi or ask his opinion.
He got a massage in the evening, with hopes that it will make it easier to lie on the radiation table in the correct position. He says the real test of that is tomorrow when he lays down for his next treatment.
We ended the evening with yummy dinner and a game of Nickel Nickel with Gump, Tud, and Andrea. It was such an improvement over the last few days that I am in great spirits tonight!
We're going to try to copy our day and make tomorrow just as smooth!
Monday, October 13, 2008
It's hard to see Tyler so affected by this radiation, but he is not feeling himself right now. His stomach is upset and his head hurts and his brain is funny. I hate to see him struggling with this new treatment, while I am profoundly thankful that he hasn't had to deal with all of these side effects the whole time.
He still has a full head of hair, but is very low on energy and nervous about eating. We got a new anti-nausea medicine today, in hopes that this one will work better for Tyler's system and he will feel more like eating. It was a pain to chase down today, but the pharmacist ended up letting me take it with the assumption that the insurance will eventually pay for it. Our case manager seems to think this is the case too, so hopefully the insurance gets resolved tomorrow. Bless the hearts of those who helped me get the medicine today because I was worried about getting something that will make it easier for Tyler to feel comfortable with dinner.
Because of our weird schedule, my eating is down too. I didn't have anything to eat today until noon. Those who work with me day in and day out know that I normally have 2 meals in me by that time (1st and 2nd breakfast). Pray for us that we can get on a more normal eating schedule. We're aiming for 4-6 small meals per day, but we have yet to achieve even 3 meals in a day.
Tyler (my king of numbers) tells me that we are now 25% done with radiation treatments. I'm holding on to that number and hoping the remaining 8 treatments pass in the blink of an eye for us. We're napping in the afternoons and taking it easy until he is feeling better.
Much love to all of you and many thanks for the prayers and good thoughts sent our way.
Saturday, October 11, 2008
Tyler had his second dose of radiation today, but also started to experience some of the side effects. He felt a little bit "off" yesterday and took a 2 hour nap in the afternoon, but was able to have some dinner. Today, Ty was a little more nauseous but took an anti-nausea pill and did okay with that.
We are worried about the effects of constant radiation, but will fight this battle together. They tell us that the anti-nausea medications are really good these days, so we'll probably use that to our benefit.
We have Sunday off from treatment, so we plan to lay low and watch football all day long. Then we are back to the radiation department Monday through Friday for additional treatments.
Friday, October 10, 2008
Today I went through my first treatment at the UW with radiation therapy to my spine and cranium. It lasted about 30 minutes total, and was relatively painless. The position I have to lay in is the most difficult part, as it puts a strain on my neck/shoulders/back. I am hoping to get some massage to help relax my muscles.
They told me I would feel nothing during the radiation treatment, but I must say that I felt it a little bit. They started with my lower spine, and it sounded like 3 separate radiation applications.........they moved to my upper spine for 3 more, and then on to my head. When they got to my cranium, I could see a black/purplish line going through my head kind of like a copy machine, and there was a strange scent associated when that was going through me. They did this 3 times from my left side of my head, and 3 from the right side. I was able to relax my head and muscles this time much better than I was able to on film day on tuesday. That day I had to lay in the awkward position for about 45 minutes.
They told me to expect that I would get nauseous about 1 to 2 hours after treatment, and my mouth, esophogous, etc... feel somewhat different but no nausea as of yet. I do have a bit of a headache, so Im trying to drink plenty of fluids.
So 1 down and hopefully only 11 to go.
Wednesday, October 8, 2008
That is really all I have this time. I hope everyone is doing really well, and we are doing fine.........well at least as fine as possible. I am preparing for my radiation therapy which will last two 1/2 weeks. The side effects sound nasty, and so I may be introduced to some unpleasantness soon. Wish Mandy, myself, and anyone else that must endure my whining and complaining.
Another bit of news is that my old work phone #, if anyone has it with the 206 prefix is no longer of use. I only have the 425 prefix (home cell), and if anyone needs that # please email either Mandy or I.
Once again I hope everyone is doing really well!
p.s. I will put up a new post soon about how my treatments are going, how they feel,etc.....I will probably spare everyone the nasty side effect descriptions though.
Friday, October 3, 2008
Pretty much only my basketball buddies from ......from how long ago? Wow! Im thinkin 15-20 years now. Only my basketball buddies will understand the creature reference. Yesterday at the UW, part of my simulation for therapy involved forming a mask for my head.....so yes guys I again will be wearing a protective mask. Fortunately for me I wont have to wear it in public...........it is kind of a cross between Mike Myers from the Halloween movies, and an NHL hockey goalie.
During my treatments I have to get into an identical position on a flat table and put my head inside this mask created just for me. The mask is pliable and acts as a cradle for my head while I try to remain completley motionless for 2 (15 minute) periods. The mask helps to prevent movement. They also have given me 6 new permanent tattoos on my backside from my bum to my neck and also on each side of my spine. They were sorry when they were applying them because of the momentary pain, but the pain was nowhere close to some of the other things Ive been through........so it was actually pretty easy........I told them to bring it stronger next time! The tattoos are pretty boring though because they are just dots.........for some reason they wouldnt tattoo Mandy's name for me?
These are markers for the radiation treatments, and they somehow get you into a precisely identical position for every day I get these treatments over 2-3 1/2 weeks. The position I will be in isnt exactly very comfortable, and so I will need to practice some relaxation exercises for my neck and shoulders. Im hoping to get some massage to help with this also.
Alright........I am really off to my blood draw now.........talk at ya later. Take care!