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.