It seemed like Day 3 might never end, with blood products and drugs running long into the night. But, here we are on Day 4 post transplant. Tyler's throat hurt a little bit more today, but we see no signs of the fever and the coughing has essentially disappeared.
One of the side effects from his chemo yesterday are long bouts of violent hiccups. He had something similar with his cranial spinal radiation, but seems to be suffering through these bouts even longer.
Today, they started Tyler on his graft versus host disease (GVHD) drugs. GVHD is a condition where the transplanted cells (graft) attack the patient's organs (host). It often begins as a rash (as your skin is the largest organ you have), but can lead to even more serious complications. Acute GVHD occurs within the first 100 days post transplant, while chronic GVHD appears more slowly than that.
GVHD is more likely if the donor was unrelated to the patient or if there is a tissue mismatch between the patient and the donor. In Tyler's case, his dad is only half match (think back to High School Biology and genetics training -- half of the genetic material is from the dad and half from the mom) so it is likely he will experience some GVHD. In fact, some GVHD is good and is termed the Graft versus Leukemia effect. This recognition of the leukemia cells as unhealthy or foreign can reduce the rate of relapse, as the transplanted marrow and it's blood can kill off any leukemia that might be hiding in the patient.
Tyler's protocol called for the introduction of tacrolimus and mycophenolate mofetil today to combat the possible GVHD. He will likely continue to take those until 6 months post transplant.
Another new medicine today was Filgrastim. This injection actually stimulates the growth of neutrophils (a kind of white blood cell) in the body. Its goal is to help Tyler's new immune system grow as quickly as it can. He will likely continue to receive this injection until his counts have recovered.
We hope that Tyler does indeed continue to grow some new blood and new white cells. He got transfusions today and the last two days before that, so I am hoping that he can have a day off tomorrow. There are so many extra vitals checks with transfusions that it fills up the day a bit. With tomorrow being Sunday and Tyler (hopefully being filled up with blood) off from transfusions, we are hoping to watch the Superbowl in peace and quiet.
Saturday, January 31, 2009
It seemed like Day 3 might never end, with blood products and drugs running long into the night. But, here we are on Day 4 post transplant. Tyler's throat hurt a little bit more today, but we see no signs of the fever and the coughing has essentially disappeared.
Friday, January 30, 2009
After spending almost 2 months at UWMC this fall, we feel like it is our home away from home. So much so, that we decided to check in the night before our scheduled visit here.
Actually, there was a mixup with Tyler's blood order and they didn't get it to SCCA in time to transfuse before they close. So, they transferred us to UWMC to get the needed red blood transfusions before his chemo dose today.
The chemo went fine today, with minimal side effects, so I am very thankful for that. We're hoping for a quiet night and then release tomorrow. Tyler had a fever last night, but it broke during the day today. He still wheezes when he exhales, but hasn't been coughing as much.
Thursday, January 29, 2009
Day 2 Post Transplant
We have a new worry, as Tyler is coughing today. We called our team nurse and they added a chest x-ray on to Tyler's morning labs. Tyler is scheduled to check into UWMC tomorrow, so I think that helps them to sit tight on this cough for one more day. Today's labs did indicate a need for both platelets and red blood cells, so we are headed back at 6pm for a transfusion of each.
Tomorrow, Tyler will get a very large dose of chemo. The cytoxan that he got last week was a small dose (14ml??) and the one that he gets tomorrow is a large dose (50ml??), so he may have some increased side effects from that. The prime goal of the cytoxan dose tomorrow is to suppress Tyler's immune system and allow the new marrow to start working its magic.
Let's hope that Tyler's cough is something that can be treated with antibiotics and that it goes away quickly.
Wednesday, January 28, 2009
Tyler and I each had a 3 hour nap this afternoon and, upon waking, I am so very thankful for these small joys in life. We are both the better for the rest and looking forward to another day of rest tomorrow.
We never heard anything about Tyler's blood test this morning, so I guess no news is good news. We expect he might need a transfusion of red blood cells tomorrow, as he got a platelets bag after the transplant and should have another day of freedom with the platelets bump he got.
Thank you all SO MUCH for the encouragement and celebration and prayer over the last two days. It's a blessing to us to know how many loved ones are sharing in this journey with us and wishing the best for Tyler. He's an amazing man and I am so excited for this first step on a journey back to health.
We are reading Lance Armstrong's second book, Every Second Counts. In it, Lance says "What surviving cancer teaches you is the magnitude of your dependence on others.... you're reliant on friends, family, and complete strangers..." Tyler and I feel this deeply, as all of you have become such an important part of our cancer fighting team.
Thank you thank you thank you!!
Day 1: We are now counting upwards towards the 100 day mark when we get to transition to the long term recovery plan.
Tyler had a restful night and woke up to scrambled eggs for breakfast. We are heading down to SCCA for lab tests this morning. They will be monitoring Tyler closely for the next 30 days to make sure his hematocrit (the kind of red blood cells that carry oxygen) and his platelets (the blood cells that are responsible for clotting) are high enough to keep him going day to day.
We've entered a waiting period. About 2 to 3 weeks after transplant, we will see the first signs of engraftment. Most likely, this will be Tyler's white blood cell count showing it's first bump.
As he has virtually no immune system right now, we have to continue to be careful about infection. Tyler must avoid live plants, cut flowers, animals, and sick people. With that in mind we're going to try to hide out at home for the next couple of weeks. I've decided that our sole contact with the world outside should be through Netflix! ;)
Go stem cells, go!!
Tuesday, January 27, 2009
After the transplant was done, you can see that Tyler looks much the same as he did before. We took him home to continue this ride from here. We have lab appointments only for the next two days, so we will be chilling out at home on Wednesday and Thursday.
His nausea got better after getting more medicine at the clinic, so I am hopeful that we will be able to keep things under control and allow him to eat a little bit more.
After processing all of Scott's marrow, the bag of stem cells was significantly smaller. It turned out that 2.5 liters of marrow really only equals 176 milliliters of stem cells. This bag of healing power was infused over about an hour. By the way, this picture was taken right at the beginning of the infusion!
After all of the steps we had to take to get here, the actual transplant was pretty low key. It was just like getting a blood transfusion, which Tyler has had to do many times already.
The picture on the right shows the stem cells going into Tyler's Hickman line. You can see that he has two lines going directly into his veins. The tubing for any medications or transfusions are connected to the blue claves and then the liquid is fed through via a pump or syringe.
The marrow from Scott was taken to SCCA, where a specialized nurse ran it through the Apheresis machine to separate out the stem cells from the rest of the stuff they collected. You can see the 2.5 liters that they collected from Scott hanging in the big bags on the right side. There is actually a second bag hanging behind the one that you see.
Of the bags hanging up on top, the one on the right is the stem cells that had been filtered out when we went to see her. The one in the center is probably the "other stuff" that was being filtered out. Scott had the marrow harvested from his pelvic bone, which is a surgical procedure (with lots of sedation). Donors for other transplants that have the stem cells collected from the donor's peripheral blood would actually be hooked up to this machine for the harvesting. It's more like donating blood at your local blood bank.
Scott's marrow harvest went well this morning, although he is quite sore now. They harvested 2 liters of marrow from him, so they were quite pleased with the collection volume. We talked to Kate a few times today and she told us that, although he is sore, it is possible he may get to go home this evening.
Tyler's infusion has been delayed by at least an hour as they are processing the marrow right now. They are using an apheresis machine to separate the stem cells from the rest of the stuff they collected. They tell us that it will take about 45 more minutes before the stem cell bag is ready to go. I've got a picture of them processing Scott's bag of marrow, but will have to post the picture from home.
Tyler has been queasy since finishing his radiation yesterday, so we're trying to get him more anti-nausea medication and then allow him to rest while we wait. We also are awaiting blood test results to see if he needs a platelet transfusion today. We hope not, but the numbers will be in soon.
Monday, January 26, 2009
Tomorrow (Tuesday) is transplant day! Scott (Donor Dad) is scheduled to check into UWMC at 5:30 am for marrow harvest, and then Tyler will check in at SCCA's outpatient clinic at 2:00 pm for marrow infusion. Afterwards, we take Tyler home and hope that the marrow takes hold and goes to work making new healthy blood.
We would appreciate all prayers to be said for both Scott and Tyler, and for the blessing of wise and compassionate care from the doctors and nurses around them both.
After the transplant, we begin the waiting period. Waiting for Engraftment is a 2-3 week period punctuated by frequent blood tests. The goal of this phase is to get Tyler's immune system to stay asleep while Scott's marrow travels to Tyler's bone marrow bed and begins to make new blood cells.
As the new blood begins to pick up, Tyler's body should begin to repair itself. He's got some recurrence of the mucositis, but we hope to keep it more under control with pain meds more often. I'm also hoping that it doesn't get as bad this time, but for now he is eating and drinking more carefully and living with more pain than normal.
Transplant -1 and counting...
Sunday, January 25, 2009
Tyler finished his 5th dose of Fludarabine today and continues to be doing well with the chemo. His throat has thickened a little bit, but any pain he has is manageable so far. I hope that it does not get much worse for him.
Tomorrow morning (at 7am), he gets his TBI at UWMC. They are giving him a very small dose of radiation, so we hope that it will not add much to his side effects. His hair has actually started to grow back in (after about 2 months as a bald man), so I am curious to see if it falls out again or continues to grow.
Transplant -2 and counting...
A friend e-mailed a few questions about Tyler and I thought that others might have the same questions, so I should answer them on the blog.
1. Is Tyler sleeping all the time (like before)?
Tyler is not sleeping full nights yet, but he is sleeping better. He's actually been using a drug called Ativan to help him sleep at night, but gets about 6 hours of sleep in a typical night.
2. What is the status of Tyler’s foot? Has it returned (or worsened) due to recent radiation and chemo treatments?
Tyler's foot continues to be a source of frustration for him. While he can move his toes about an inch upwards, the foot is still extremely sensitive and largely unresponsive. It has not worsened, but we expect it to be a long time before it completely heals. There is also a risk that it might never heal completely. Tyler worries that he will have trouble working if it does not heal, as his job as a groundskeeper requires him to be pretty mobile.
3. Is Tyler reachable via email?
Tyler is not currently reading his e-mails, although he will probably catch up on them someday. If you need to get a message to him, you can e-mail me to pass along your message.
4. Is the radiation risk completely over? Did it “wear off” or something, such that he must no longer be isolated?
As I understand it, your body actually processes and excretes radiation through your urine. So Tyler got a radioactive transfusion Thursday before last, but his body was able to process and excrete the radioactivity over the days that followed. He was released as soon as he was under the safe guidelines for our state. The radioactivity level would continue to drop as his body continued its normal functioning. While we haven't measured him in the last few days, I would guess that he is probably not radioactive anymore.
5. Is TBI a round of intense radiation? I did not realize that he could be an outpatient at this point in the process.
Tyler's TBI tomorrow will be outpatient, which sounds like it is normal for these procedures. Actually, we were also surprised by how much of this is outpatient. According to the radiation oncologist that is handling Tyler's TBI, he is getting the smallest possible dose of TBI. They are only doing this to help suppress his immune system so that it will accept the foreign marrow.
6. Are the doctors already discussing possible complications due to partial match (half-match?) on the donor vs receiver? I did read the CML booklet on this, and it of course acknowledges a wide range of possibilities.
The doctors prefer not to tell us about things like possible complications, although they likely discuss them in their morning rounds (when they discuss each of their active cases). The half-match issue has been my biggest worry throughout this process. It is my opinion that someone wanted Tyler for this study so they never attempted to search for a better match in the world bank. While we pushed and pulled on this issue, we made no headway in getting them to give us additional options for the transplant.
There is however, an upside to using a parental half-match. Typically, you experience less graft versus host disease (GVHD) with a related donor. I'm not sure how things will work since there will likely be an increased risk for GVHD with a mismatched donor and less with a related donor. I'll try to address GVHD more in a future post, as it is a big issue with transplants.
7. Are you able to work a reasonable number of hours? You must be running constantly, exhausted.
My coworkers have my undying thanks for allowing me to be with Tyler throughout this process. I'm not sure how I can ever make it up to them, but their flexibility has made all of this possible. I work as often as I can, often from home or the hospital. We've pared down my responsibilities as much as possible, but I feel guilty not helping out more. I was working 1-3 days per week, but am mostly off now. I only worked 4 hours from home this last week and plan to be off completely this next week as well. I'm the lead on a big project at the end of February, so we'll see how I balance work and home as I get closer to that deadline.
I also owe my thanks to the friends and family members who have helped us to keep up with day to day tasks. Several of Tyler's high school buddies came up and weeded our front yard (since I would have probably pulled out all of the plants without Tyler's guidance) and completed some home maintenance, Debbie (my mom) who helps with grocery shopping and house cleaning, and Andrea (Tyler's mom) who helps get Tyler to appointments so that I can sneak off to work from time to time.
Several others have offered to help, but timing doesn't always work. Even if we haven't been able to take advantage of your kind offers, we certainly appreciate them!
We are both getting tired though and are ready for some time of normalcy. Sadly, I think we have a little bit of time before we get there. If Tyler's side effects are kept to a minimum, we may have some downtime over the next 2-3 weeks while waiting for engraftment. Once the new marrow starts making blood, any side effects that he had should start to diminish.
I hope that answers a few of your questions as well!
Saturday, January 24, 2009
We had labs and chemo today at SCCA, but were home by noon. And that included a 2 hour wait for a room for the chemo. It was nice to have such a quick day there and get to spend time at home for the afternoon and evening.
Tyler is getting some mouth and throat soreness from either the chemo or the radiolabeled antibody, but hasn't been too impeded yet. We're mostly just being a little bit more careful about the food that he is eating. If it gets worse, we'll probably have to start up the pain meds again.
Tomorrow is Tyler's final day of chemo, and it is another quick day. Monday will be his Total Body Irradiation (TBI) at UWMC and then a few final appointments at SCCA. We'll have Monday evening and Tuesday morning at home before the transplant. Tyler's dad will check into UWMC very early on Tuesday morning to get his marrow drawn out. The doctors will do some magic to prepare the marrow and then infuse the marrow into Tyler on Tuesday afternoon.
Transplant -3 and counting...
Friday, January 23, 2009
Tyler and I have just completed 2 marathon days at SCCA. On Wednesday and Thursday, they gave him two chemo treatments each day, which meant we arrived at SCCA at 7:30am for a quick lab and then headed up to their infusion suites to begin the day. We left between 9:30 and 10pm both days, so we had long days.
Most of the day was hydration and side effect management for a drug called Cytoxan. Tyler only has to get that drug these two days pre-transplant, but will get a 3rd (and larger dose) a few days after transplant. For the transplant protocol he is on, Tyler had to get 4 hours of hydration before they could even start giving him the drug. That's because this particular drug can cause your damage to your bladder. Tyler got so hydrated that he ended up having to urinate (or "void" according to the medical staff) every 60-90 minutes. That kept the chemo from settling in his bladder and causing trouble.
His other chemo was called Fludarabine (or "Florida Bean" as we like to call it). He gets it daily Wednesday through Sunday, but it is a quick one and takes less preparation.
Tyler did FANTASTIC both days! No nausea during the treatments and tons of eating both days. I sincerely hope that this continues through the transplant day next week. After almost a week of isolation, Tyler and I are both thriving on the chance to be together again, so we just spent the days keeping company and enjoying the hours we could be together. Everything is easier on us both if we can be together and strengthen each other.
With the treatments, his blood production is beginning to fall off. We expect that he will get several transfusions to tide him over until his dad's marrow takes hold and begins to make new blood for Tyler (likely about 1 month from now). We begin that today, with 2 units of red blood cells scheduled.
Transplant -4 and counting!
Tuesday, January 20, 2009
Thank God Almighty, Tyler is free at last!
He didn't get to safe ranges until about 3 in the afternoon, after which they decided they needed to get him more red blood cells before we checked out. We got home at about 8pm tonight. We'll be at SCCA for about 2 hours tomorrow and Friday for chemo infusions, but we get to spend a few hours at home tonight.
A friend e-mailed the first glimmers of the following story to me:
It appears that Michelle French, a national team player from Washington State, has also been diagnosed with a blood cancer. The Washington State Youth Soccer Association is raffling off tickets to a Manchester United game to help Michelle with her medical costs. If you want to help with the fundraising, please go to the Washington State Youth Soccer Association website
And if you hear of other soccer players with blood cancer, I'd certainly like to hear. It's something that I want to pursue more when my time frees up again, in hopes of finally putting my mind at rest on whether or not there is a link.
Monday, January 19, 2009
My darling husband was measured this morning, but he must have still been glowing with radioactivity. His radiation level was down to 12.1 mR/hr, so we are hopeful that he might get to come home tomorrow.
The nuclear medicine specialist tells us that we can't do anything at all to hurry along the process, but I keep hoping that something will work. Tyler and I are both looking forward to spending more time together. We've only spent a few hours per day in each other's company, and we are separated by most of the room to protect me from the radiation.
Tyler's dad (his marrow donor) had an appointment today to bank some of his blood in preparation for the procedures next week.
We hope that Tyler is able to spend tomorrow night at home, as he begins his conditioning chemo on Wednesday. He'll have 5 days of chemo, followed by Total Body Irradiation next Monday, and a transplant next Tuesday. Wow! After months of delays and complications, time is now speeding towards this transplant. We are certainly ready to begin the recovery phase!
Transplant -8 days and counting...
Friday, January 16, 2009
While in isolation, Tyler will be drawing his own blood for labs and keeping his Hickman line clean with daily maintenance. You can actually see him preparing a saline flush as he finishes his first solo blood draw. While it would be scary to have to operate your own IV, the nurses must minimize the time they spend in Tyler's room. They will occasionally come into the room to administer IV drugs, but they limit their visits quite a bit. And of course, if there was an emergency, the medical staff would come into the room to care for Tyler.
There are definite pros to this isolation status, as Tyler should also get some peace and quiet without frequent interruption from nursing staff. Wendy (the nurse who coordinates the research study that we are participating in) says that Tyler should just view this as a brief vacation. He gets to do almost anything he wants for the next 5 days, which should help the time to pass more quickly.
In addition, anything that goes into the room will stay in the room. Tyler's appetite was fantastic today, so we saw this in practice. All of the food they bring is in disposable containers and Tyler is instructed to only take the pieces of food that he wants. He can actually dish himself up buffet style at the door of the room, so that he doesn't fill his trash container with lots and lots of food.
At 8:30 on Friday morning, Tyler measured only 58 mR/hr. He won't be measured again until Tuesday, with the weekend and holiday for Martin Luther King Day. We just hope that this radiation continues to work over the next several days.
Transplant -11 days and counting
Thursday, January 15, 2009
Tyler's infusion took place without complications today. It started about 1:30 and ran until just after 7pm. We were able to help him get settled in his room before the infusion started, but once they wheeled in the cart of radioactive materials we had to leave the room.
The picture at left shows Tyler in his room from our chairs on the other side of the hall. Although we have teased Tyler about becoming a bubble boy, you can see that he isn't really in any sort of bubble. He is in a regular hospital room (with another fantastic view) at UW. In order to keep the room radioactivity to a minimum, they have covered every surface that Tyler might touch in the course of his stay. You can kind of see the blue tape along the floor coverings and on his table. People emit radioactivity, but objects do not become radioactive unless they are touched by a radioactive person.
At the end of the infusion, Larry (from Nuclear Medicine) measured Tyler's radioactivity level to determine safe distances for visitors and nurses to stand outside Tyler's room. They measure the amount of radioactivity in milliRoentgens per hour (mR/hr). This is essentially the amount of radioactivity you absorb if you are standing 1 meter away for 1 solid hour. Tyler was emitting 77 mR/hr at the end of his infusion. He'll be isolated at UWMC until his radiation level is down to 7mR/hr, which we expect will be early next week.
With luck, the radiation and the antibody that they gave him today will search and destroy any leukemia in his body. Then we move on to the next step of this process...
Transplant -12 days and counting
Wednesday, January 14, 2009
Tyler had his final blood test today and proved that he was not a mouse (or something like that)... Actually, Tyler had a HAMA blood test today to check for "human anti-mouse antibodies". The radioactive antibody that they will be giving Tyler actually comes from the white blood cells of a mouse, so they need to make sure that his body has not formed any antibodies (HAMA) against his potential treatment.
Tomorrow he gets his therapeutic dose. It will be another 5 hour infusion, following which Tyler will stay in the isolation room at UWMC for several days as his body processes the radiation it has received. We don't know exactly how long Tyler will have to stay there, as it will depend on how fast his body processes and eliminates the internal radiation. We expect him to be in the hospital at least through the weekend.
Sunday, January 11, 2009
This week's schedule is an important one for us. Tyler has some standard appointments early in the week (we'll see our nurse and nutritionist and get some blood drawn), but the big stuff starts on Thursday. That is the day that he becomes the Bubble Boy. He's scheduled to receive his therapeutic dose of the radiolabeled antibody at UW, as he begins his isolation.
The therapeutic dose is the amount of medicine needed to treat the disease, so this is the first (and most important) step of Tyler's transplant conditioning. The goal of the conditioning is to prepare Tyler's body to accept the new marrow. This particular treatment injects Tyler with radioactive antibodies that seek out the cancerous cells and kill them off from the inside. As we saw in the Gamma scans, the radiation from the test dose moved into Tyler's marrow, his spleen, and his liver. These are all blood heavy areas of the body, so you can imagine how the full dose will be attacking the cancerous cells in his blood to kill the disease.
Tyler will be measured for the amount of radiation that he is emitting and we will be told how close we can get to him. He will be emitting gamma rays, so there is danger if we get to close to him. For that reason, the nursing staff will limit their visits to him.
In addition, anything that Tyler touches will become radioactive. So, anything that goes into the room with him will stay there with him for the entire time. Any food that he orders and doesn't eat will stay there with him for the entire time. Ideally, we'll throw away most of what goes into the room with him, but for the stuff that we want back... The UW will monitor it for radioactivity and return it to us at a later date, usually about 90 days later.
We plan to have Tyler take a computer in, so that he can read e-mails if he is feeling well enough. Other than that, he'll be spending a quiet weekend at UWMC. Our hope is that the side effects will be kept as small as possible, although we are worried about a recurrence of the mucositis.
Day -16 until transplant
Wednesday, January 7, 2009
Tyler had a long day today, although most of the time was spent waiting around. He had an 8am appointment at UW and then 11, 12:30, and 1:30 appointments at SCCA. The biggest challenge of the day was that he wasn't allowed to eat before his 1:30 appointment, so he was hungry the whole time he was sitting around.
I was supposed to take him to his appointments, but opted out for illness reasons. I've been feeling a cold building for a few days and finally had a sore throat last night in this morning. The SCCA's policy is that patients can go to their appointments when ill, but must wear a mask. Caregivers and other visitors must stay home if sick, as they do not NEED to be at the appointment. I hate the rule, but probably should follow it.
Since early fall, we have actually had to fill out a form before proceeding to any of our SCCA appointments. They ask if you have had any signs of a cold or the flu in the past week. Both patients and their companions are supposed to fill out the form and get a sticker in return that says "I've been screened."
So... Andrea (Tyler's mom) took him to his appointments and I went to work instead. Isn't that crazy? I was sick, so I DIDN'T take a sick day from work. But... it was good to save my leave for another day when I can be of more assistance. And I was able to teach the class I had asked a coworker to cover for me. And just for the record... I DON'T recommend going to work when you are ill. I'm just crazy.
Unfortunately, I also have to keep some distance from Tyler at home too. I have to remember not to kiss his gorgeous face as I might unintentionally pass along some of my germs. Let's hope that I get healthy soon. I had planned to work Thursday and Friday of this week, while Andrea took Tyler to his appointments.
Tyler reports being tired and achy today, and reported a slight temp during his evening nap. Other than that, he looks good. They reduced his TPN (IV nutrition) dose today, so he'll be eating more and more over the next week. Things are definitely moving in the right direction now. We just have to get him as healthy (and now me) as we can over the next week, so that he can be successful during the transplant.
Thanks for cheering with us about the results from the lumbar puncture. It's great to have so many friends and family members cheering with us!
Tuesday, January 6, 2009
We finally tracked down the LP results this morning and are THRILLED to report that Tyler's spinal fluid continues to be clear of any leukemia. Feel free to join us in our little happy dance at that news.
We reported to UWMC this morning at 8am to get the test dose of the radiolabeled antibody. The doctors will use the gamma scans and bone marrow tests this week to calculate the most effective dose to give Tyler when he gets his therapeutic (real) dose of next week.
In the picture on the left, you can see Tyler in the middle of the 5 1/2 hour infusion of the test dose. The lead box in the lower left contains a syringe with the radiolabeled antibody in it. On the right, Tyler is also getting lots and lots of saline to help his body process all of the radiation through without causing more damage than necessary.
Some of the premedications that they gave to him caused him to be pretty sleepy, so it's been a fairly quiet day for us. Neither one of us slept well last night, so I was pretty thankful to see that Tyler has two beds in today's room. The nurse was kind enough to let me use the 2nd bed and I took a nap this morning too. Now I'm a little less like the Wicked Witch of the West and Tyler is starting to remember why he married me.
We have another gamma scan tonight and then will head home and try to sleep it all off. They say that Tyler will likely feel a little achy and sore tonight and tomorrow, so it is important for him to rest as much as possible.
While we know there are big steps ahead for us, we are thrilled to finally be taking ANY steps towards his bone marrow transplant. Provided everything goes well this week, our next big thing will be next Thursday. Tyler is scheduled to get his therapeutic dose that day and begin his stint as Bubble Boy, the radioactive superhero of the University of Washington.
Day -21 and counting...
Monday, January 5, 2009
We didn't hear anything today about the status of Tyler's lumbar puncture, so I can only assume that no news is good news. We go to the UWMC for the Test Dose tomorrow, starting at 8am.
In preparation for the radioactive antibody he will be infused with, Tyler has started taking Iodine drops each day. Apparently, the Thyroid is a magnet for any radiation the body receives and the goal is to "fill up" Tyler's thyroid with iodine before the radiation starts, so it will not be able to absorb any of the radioactivity his body will get.
The thyroid gland is a butterfly-shaped gland in your throat. The thyroid gland uses iodine from food to make two thyroid hormones. The thyroid gland stores these thyroid hormones and releases them as they are needed. The hormones regulate the way your body uses energy (your metabolic rate), so too much or too little of the hormone can affect people's behaviors.
Saturday, January 3, 2009
I thought some of you might be interested in seeing more about my nursing duties. Pictured at right, you can see Tyler's TPN. This is the supplement we use for Tyler's nutrition, as he isn't eating full meals yet. He gets an IV each night for a 12 hour period. The blue and gray pump on the left side of the bag controls the speed at which the liquid is infused. Thankfully he sleeps most of that time, and is only partially bothered by a permanent attachment. The IV is contained in a backpack and he just needs to remember to take it with him for any nighttime wanderings.
To prepare the TPN, I take the bag of stuff and add 3 vials of vitamins to it. I've even got my own "sharps" disposal, as I go through 3 needles per night. It's a very serious business, but I've gotten fairly quick at mixing stuff up. I just have to remember to pull Tyler's TPN bag out of the fridge at dinner each night, so that he doesn't have to suffer through liquid ice cream at night. He gets plenty chilled when moving to a new room these days, so I shouldn't add to the freezing.
Friday, January 2, 2009
Today was a big day for us. Tyler's transplant protocol officially begins next week, IF the results of today's lumbar puncture show no signs of leukemia in his spinal fluid (CSF). I'm nervous about the wait to next week to get the information back, but there is nothing to be done other than wait. The doctors essentially told us that they don't know what they'll do if the spinal fluid is not still clear. I'm glad they are checking, I really am, as Tyler's transplant is certain to fail if there is any leukemia in the CSF. But at the same time, I really want to know and start dealing with the answer. We've been plagued with bad news throughout Tyler's treatment, so it's hard not expect it. I'm praying hard that everything will be a "go" for transplantation on schedule.
We also met with the GI doctors to find out why Tyler is still struggling so much with eating. He doesn't feel a great deal of nausea day to day, but struggles to have an appetite and to keep his food down consistently. The leading theory after their investigation is that Tyler's medications are responsible for his stomach discomfort. We're switching out one of his medications over the weekend to see if that helps. Sadly, I'm now thinking that it won't.
Happy New Year to all! We wish you good health and good cheer for 2009.