Sisterly Bonding...

Rachel here. You know, a lot people spend time "bonding" with their sisters. Some play games, others watch a movie or take a walk around the block. Some might stay up talking until the middle of the night. Or they might bond by playing basketball on the driveway or throwing a tennis ball back and forth. Some will take a road trip or go somewhere fun downtown. Going out to lunch or talking to each other on the phone are also good options.

But not for me and Lauren. Our "sisterly bonding" (as Lauren called it) involved me standing behind her for 45 minutes while I ran my fingers through her hair and removed large chunks of it. It seemed like it was never going to end. The hair just kept on coming out. It was actually a sad experience for me. However, I struggle with ever being sad. I just can't do it. So this picture shows me and Lauren "bonding" while I attempt to look sad. Notice the large pile of hair on the table. It's crazy how much there is. And it still continues to fall out everywhere on everything. Our bathroom floor is covered and it is in every garbage can in the house. I told her that she can at least be grateful that she had thick hair.

So the next time you want to complain about a bad hair day, be grateful that you are having a hair day. And the next time you get a chance to bond with your sister, do something more fun that Lauren and I did. PLEASE!!! It is not an experience I would wish upon anyone.

On a side note, I learned this week that if you go to Google Maps and look up how to get to Japan from anywhere in the USA, it will give you driving directions to the west coast and then tell you to "Kayak across the Pacific Ocean" to Hawaii and then continue on to Japan. hahahahahaha :) For anyone daring enough to kayak across the ocean, I wish them luck.

The Realities of Chemo

This would be the insane amount of medications I get to take every day.

The lovely sunset driving home... Aren't the clouds awesome?

Hey it's Lauren!

Tuesday was Week 4 of chemotherapy. For those curious, this means I received cytoxan (once every three weeks) and rituximab (once a week for six weeks). The cytoxan requires pre and post-hydration in order to ensure the "toxins" don't totally destroy my body and I have to be watched for an hour after receiving rituximab to ensure that my blood pressures don't bottom out. I also get to take oral prednisone, a corticosteroid, for the next five days which means I will probably have a puffy face and swollen everything else, be incredibly hungry and irritable, and not be able to sleep at night. Yay.

The whole process went from 8:30 this morning to 6:30 at night. Uness you count driving in Chicago traffic. Then it goes from 6:00 to 7:45.

Now to take you through our day in pictures....
This would be the traffic we sat in for an hour and a half. While it was downpouring. So much fun. I have no idea where all these people really have to be at 6 or 6:30 in the morning. Mom and I entertain ourselves (and stay awake) with iPod music.

The lovely sign welcoming us to the hospital. This is the main entrance to the hospital.

And here is where I was for the rest of the day. Actually we got to sit on lovely plastic blue couches for an hour to wait for my blood to be drawn and then to wait for the blood counts to come back. If certain blood counts, like hemoglobin (the red blood cells) and white blood cells, are too low then the cytoxan would be put off for another week. The bed I'm on is probably one of the oldest in the hospital.

The bag with the yellow label on it is one of the chemo drugs. They are both clear, like regular fluids. Just a lot more toxic than fluids. And a lot less fun to have to get.

So I came home and took a shower after feeling nasty all day from the chemo. That ball in my hand is the hair that came out in that twenty minutes. When I brushed my hair another ball that big came out. Depressing. No fun. Wishing my hair would stay stuck to my scalp. Plus I find hair everywhere I go - on my shirt, on the chair, on the desk, on my pillow. And there's no way I can pick up every single strand. Then my scalp itches like crazy because of the dead hairs mixed in with the ones still on my scalp.

So right now the hair falling out is really just plain obnoxious. It'll be a lot more depressing once the bald spots start appearing. But so far you can't tell. Yet.

Anyway, that really is the only major side effect. Along with headaches. And today I've been incredibly tired and haven't felt great to my stomach. My doctor doesn't want me to eat any juice or too many carbohydrates this week because the prednisone can cause my blood sugars to sky rocket and we really don't want to have to deal with insulin shots. This should be an interesting week!

Miracles? Absolutely!!

On this Easter Eve, I am pondering miracles and healing.

Some of you may be thinking that your prayers and fasting have done no good because a miracle didn't happen - Lauren has cancer and has to get chemo. While that is clearly a bummer and I wish with you that it wasn't the case, I believe that we have a Heavenly Father who loves each one of us and hears our prayers. I am sure He wishes He could take away our burdens whatever they are. Just because our trials don't disappear, doesn't mean He hasn't heard us. Asking why, thinking it isn't fair, and being bitter doesn't allow us to have the spirit with us and prevents us from feeling the peace we seek in order to endure the experience. Some people only have to make the choice not to be bitter once. Some might have to choose once a week, some maybe even once an hour.

Daughter Arise by Simon Dewey

So often when we think of miracles we reflect on those recorded in the New Testament, of Christ touching the eyes of the blind or telling someone to rise up and walk or commanding the waves to be still. Then the miracle happens instantaneously. While I often wish for that, Lauren's life has never been like that - the problems haven't disappeared, but the way has been provided for her to continue on in spite of them. When I think of all the scenarios that could have happened with Lauren the past few months, the burden clearly has been lightened and she has been lifted through it.

Some have kindly asked us how we do it. One day at a time... begging and pleading for divine intervention and trusting that it will come! We always follow the same formula - Lauren receives priesthood blessings, we exercise faith, prayer, and fasting and recruit others to help with that, get her the medical help she needs, continue to be as obedient as we can to be worthy of His blessings, and then we have no choice but to apply the scripture (DC 123:17) which says to stand and watch for the arm of God to be revealed.

So, please know that I stand as one who has complete trust in Heavenly Father - I know He loves Lauren even more than I do. I also give thanks for the Savior and His sacrifice which we honor this weekend. He did "take upon him the pains and sicknesses of his people...that his bowels may be filled with mercy...that he may know...how to succor his people according to their infirmities." (Alma 7:11-12) We have felt that and are so grateful for that! Can you imagine how amazing it will be for Lauren to eventually have a resurrected body - with no scars and a perfectly functioning heart?

Some may ask if miracles still happen. The Holbrook family knows that they do!

Prom and Pictures

This is Rachel. Mom and Dad are currently reliving their high school days on a date to the LDS Prom up in Lake Geneva, Wisconsin. (They're chaperones in case you were wondering.) Before they left, Mom pulled out some old pictures of her junior prom. They were cute, but let's just say that I am SO glad that times and styles have changed :) I'm just kiddding, but here's a picture of the cute couple.

Earlier today, Lauren, Mom, Megan, and I spent 2 hours at the photo studio getting Lauren's senior pictures taken. They turned out really cute. Here is one of our favorites.

Lauren is doing really well. She returned to seminary for a couple days this week and feels a lot more energetic. She despises the twice-a-day shots, but is feeling great other than that. She came to school for a portion of every day this week and even got to go to the spring assembly yesterday. We all love having her at home with us!

Oncology Clinic

Lauren has been frantically working on some scholarship applications - she feels bad that she hasn't ever been able to have a job and make any money. She isn't a fan of this picture, but I wanted to show her regular hair. She has been going without her wig since January.


Chemo yesterday went well. One of her chemo drugs, Rituximab, she receives each week. It doesn't seem to cause her too many nasty side effects. We had heart tests yesterday as well and all seems to be fine there. The past few days Lauren has been much more active, awake and out of pain. She stopped taking oral pain meds on Friday. I just picked her up from her 2 hours at school and she plans to go back a bit later.

Oncology clinic is such an interesting place. Cancer is no respecter of age or nationality or religions or economic status. We run into the poor, the wealthy, all colors of skin and languages, kids with parents, grandparents and caretakers. Some of the kids look so sick - it just breaks your heart! Baldness is in style on the 4th floor at Children's. The successful businessman thinks his child should be taken care of first because he is so busy. Some parents dote on a whining child's every wish. Then there are those who try to play and laugh with their child. It is a great people-watching experience!

It made me grateful in a way that this all began for Lauren as an infant. She has never known anything else. I can't imagine a perfectly healthy teenager all of a sudden having their world fall apart with a cancer diagnosis.

Loving Home!

Lauren here!

I saw an episode of the TV show "Good Luck Charlie" a few days ago that was thoroughly entertaining for me. The mom of the family had her eye poked by her two-year-old daughter and went to the hospital to have it checked. Once there, the doctor says she's free to go home since the eye only needs some eye drops. However, the mom starts crying, saying she doesn't want to go home to the cooking and cleaning and diaper changing and homework helping. Being a nurse at the hospital, she blackmails the doctor into keeping her overnight. The family members come to visit (four kids and her husband) and she attempts to get rid of them in order to return to watching TV and eating Chinese take-out. You have to laugh watching this from a hospital bed - the same bed you've been in for the past 21 days - as you wonder what it would be like to WANT to be stuck there.

On the contrary, I absolutely love being at home!!! My own bed is so much more comfortable (as is our family room couch) and the food is homemade! Yum! I get to see every family member every day. I'd forgotten how loud it is at home with a trumpet, clarinet, saxophone, and piano along with music playing during homework times and siblings telling stories from their day. I'm still enjoying the noise (or at least trying to) because the alternative is a silent hospital room which is no fun at all. I love being able to use nice toilet paper and crash on our couch and walk to the fridge for a snack. The stairs can take energy out of me but I'm trying to move around to get things for myself and build up strength.

I managed to go to an hour of school on Friday to talk to the nurses and my counselor as well as my government teacher. Today I went to sacrament meeting at 1 - I'm still not really waking up until 9 or so, and meds are at 10. Tomorrow I'm hoping to go to two hours of school before the next chemo dose on Tuesday. Maybe I'll even make it to seminary this week... High school graduation is in six weeks!!! I just have to finish government, take the AP Spanish test (I'll kick myself if I don't at least try it), and pass two Constitution tests. Oh, and I'm graduating from seminary which means I need to finish about 30 make ups within the next two or three weeks.

Health wise, I'm hanging in there. Barely. The docs do want to treat the blood clot that stretches from my sternum to my left shoulder (roughly) which stinks because the treatment is 3 months of twice-a-day shots that are quite painful. Currently, mom is giving them to me (she says "sorry, sorry, sorry" the entire time I'm saying "ow, ow, ow") but I'll eventually have to give them to myself which totally stinks. My hair still seems to be stuck to my scalp and I'm hoping it stays that way for the next six weeks at least. I've dropped at least 20 pounds since the beginning of the year and am skin and bones right now - though I still have some flab which serves well for shot-giving areas. At least I've started eating again. I still have about 16% energy level each day and am struggling with falling asleep at night. Could be side effects of chemo, could be the insane hospital schedule still stuck in my head. And I still have headaches every day though they aren't as severe. I'll probably have to get another blood transfusion on Tuesday along with the chemo. I think that covers everything.

And now I go to our comfy couch for a nap...

A Great Day

Lauren says she feels better today than she has for 2 months. I could tell because she woke up and said "Hi Mom!" rather than just hi or hey. She also walked down the stairs at a normal pace, not holding onto the railing. She instigated conversation rather than just waiting to respond. She went to the fridge to look for food rather than me trying to find things to tempt her with. She stood up straight as she walked, not hunched over and hasn't put the pillow against her stomach once. She opened a book and tried to do makeup work on her own. She only took 2 naps. Little things, but very significant!!!!

Today for me has been odd - it is a different thing to go from "survival" mode to "what do I want to accomplish today" mode. Whenever we come home from a hospital stay, I realize that other people's lives have continued on as normal while mine has stood still for a period of time. After a particularly difficult night and morning with Lauren, Blair was on his way to work, called and said it was hard to get motivated about discussing the price of toothpaste after what he had just been through. It alters your perspective just a bit.

Hopefully I won't have much to report for a few days, so don't be alarmed. I will let you know how dose #3 next Tuesday goes.

Thanks

Just wanted to take a minute to say thank you for the food, flowers, gifts, cards, help with the kids, prayers and quiet acts of service that have been showered on us. It is so uplifting to hear words of encouragement and support and have people believe in you when you aren't sure you have the strength to do hard things.

Coming home is an amazing experience. I just breathe more evenly when we are all together!

We went back today - only a 14 hour experience - for some more chemo. She did fine with the chemo drugs, however Lauren's left arm is swollen after having a PICC line in it for a week. We decided to do an ultrasound just to check to make sure there wasn't a clot. The poor kid has the worst luck! Of course, there is a clot near her left upper chest and shoulder. We will find out tomorrow what the treatment plan is for that.

WE ARE HOME!!!!!

Need I say more? Lauren is enjoying the couch in the family room and took a walk outside in the fresh air and sunshine. YAY!!!

Doing it again

I am always entertained by the variety of get well cards that I receive. One that I got this week said: "Your strength may surprise you... we all know you have the strength to do it again. And again. And again."

I'm really getting tired of doing this again and again.

Today I came off of all my IV meds and we're seeing how everything works out through the night. The plan is to go home tomorrow (YAY!) and come back on Tuesday for outpatient chemo. Just need to make it through tonight...

Dad and I listened to Elder Nelson's conference talk about facing the future with faith. I love listening to the talks from conference! There is always something in each talk that I can apply into my life. I loved Elder Nelson's quote from Pres Monson who said "your future is as bright as your faith." Although even more difficult times are ahead, our faith can always help carry us through, especially as we lean on Christ.

I am sure there is a reason that I am doing this again. Hopefully it is to get it out of the way before I leave home and go to BYU. Although it is pretty discouraging, I know that we'll get through it.

A Slightly Happier Note...

Hey everyone - Lauren here! I guess it's about time I updated the blog myself. We should be going home by Monday. If we aren't out of here by then, I might go crazy. I'll still have some pain and I am still not on a solid diet, but at least I will be at home.

On a happier note, last week as I was coming out of surgery, Mom signed me up for my housing at BYU. The other day, I got an email from my soon-to-be roommate at Helaman Halls, Zoe. She said hi in one email and about an hour later, sent another email saying she had found our family blog. I am guessing she was slightly shocked, but she and her parents said their prayers are with us and hope everything goes well.

At this point, I am sick of being puffy, of being woken up all night, being in pain and the hospital in general. Thank you for your prayers - Lauren

Day 18+10+2

This is day 18 of our current hospital admission. A week before that we had a 10 day stay. 3 days before that we had a quick 2 day visit. The weeks leading up to that were several day-long visits. To put that in perspective, from the date of her 3rd transplant surgery to walking out the front door was only 17 days. She is frustrated! The steroid portion of the treatment helps inflammation but causes puffiness. It is a strange drug. Anyway, her face is really puffy which makes her uncomfortable. She was doing well most of the day, but the pain returned in full force at about 6pm. Today is my birthday - I told her my wish was for a day of not cleaning up bodily fluids - only 4 hours left!

On a Side Note....

(This is Rachel) Megan, Nathan, and I had sooooooooooooooo much fun in Utah!!! We did lots of different things and saw lots of family and had fun spending time with everyone. I feel bad that we had a great time while Lauren was stuck in the hospital, but here is a picture of the three of us in front of the mountains. They were my favorite part- SO PRETTY!!! The last time I was in Utah during the winter was when I was 7, so I didn't remember how gorgeous they were with the snow. Oh my goodness- I was in heaven. Seriously, I'm pretty sure that there are mountains in heaven :)



(this blog needed a little more happy news anyway...)

Chemotherapy

(This is Lauren getting some B+ blood!) On Tuesday evening after the PTLD was confirmed, Lauren and I talked about whether or not her body could take any more, what her dreams are and how she has to exercise faith and work hard to try to help any healing process along. We told her we would help and support her however we could.

The kids arrived home Tues night and I left the hospital with them excitedly telling me every detail about their amazing trip. It was so good to be with them!

After Lauren and Blair heard the recommended treatment plan Wed morning, they called to explain it to me. I asked her what she wanted to do and, in classic Lauren style, she said.. I am not quite "fixed in my mind with a determined resolution" but I am getting there. (See Book of Mormon)

There were some scary moments last night prior to starting chemo, but she's now had her first doses and slept through most of it!

As I explained to mom and dad, chemotherapy refers to a group of drugs used to treat cancer. The cancer type determines the recipe and combination of drugs used. They are supposed to target the cancer cells and kill them, but they also damage your normal cells and have unpleasant side effects.

I feel grateful that this recipe can all be done on an outpatient basis (as long as there aren't complications) and she'll be happy that the hair loss side effect isn't supposed to be as bad as last time. The nausea shouldn't be as extreme either. In 2009, each treatment was 5 days inpatient and involved 5 or more drugs that had to be timed just-so. The data indicates this recipe should provide a positive response.

All the soft food Lauren has tried to eat has come back up. The diseased section of bowel must be too constricted to let it through. So, again we wait for the chemo to start working.

The ups and downs!

Blair here - it was my turn to be at the hospital today (Wednesday).

Lauren's oncologist, Dr. Weinstein, came to visit this morning to let us know exactly what kind of cancer we are battling this time, to present a plan of action and to discuss with Lauren if and how she would like to proceed.

This is definitely cancer. It is called Diffuse large B-cell lymphoma. This is a different kind of cancer than the one she had last time. The doctor wants to treat it with a combination of steroids (Prednisone) given for 5 days up front, Cytoxin given once every three weeks, and Rituximab given once each week. Depending on how Lauren's body reacts, the treatment cycle will last from 12-18 weeks.

Lauren was presented with two options. The first option is the chemotherapy treatment described above. The second is no treatment, which does not have a good ending. Lauren wants to go through the treatment and continue to fight.

She continues to lose blood and they can't figure out why or how. Her blood pressure went extremely high tonight for a variety of reasons which is concerning. Before they can start chemo tonight, we need to get her high blood pressure under control and give her 3 units of blood via transfusion.

She is currently resting peacefully, We hope it won't be a long night ahead and that all of the treatments will be able to move forward as planned.

Thank you for your continued faith and prayers! We can feel them making a difference for all of us!

It's Official

Hey, this is Lauren. The doctors came by today and it's official. Cancer is back. Still waiting on a plan. More news tomorrow. Thanks for your continual prayers!

The Heart Factor

Since Lauren has a transplanted heart, she takes immunosuppression medicines every 12 hours. The human body is so amazing - if she didn't take these, it would recognize the heart as foreign and try to attack it. These meds keep that attacking system at bay. However, that means her body also doesn't recognize other "bad or foreign" things that are going on. If you or I get a cold or a flu bug, our immune system kicks in and tries to fight it off. Hers doesn't know to respond that way. Now that they know there is some disease process going on, we have to wake up her immune system (by decreasing these meds) so that it tries to fight it off. This puts her heart at risk. It is a delicate balancing act. She has a heart biopsy every few months to test for rejection - if there is any evidence of that, we increase her meds. You might remember that, with no outward symptoms or signs, several routine biopies last year indicated rejection. That was our discussion with transplant team today and how we can manage that. Lauren also had the bone marrow biopsy. She can finally drink clear liquids today and will be advanced to soft foods tomorrow if she can tolerate it. We have been fighting blood pressure issues all day and trying to get the correct fluid balance to keep her hydrated. No official results of biopsies came back yet. That is actually a good thing. Although I hate waiting, it gives her a little more time to process what is happening.

Hard Conversations

I don't even know how to explain today. Now that Lauren is 18, she is considered an adult. That means she signs all the paperwork - consent for blood, consent for treatment, permission to operate, etc. The oncologist told her of the probable PTLD findings Friday night. We explained what happened with the surgery on Saturday. Today Blair, Lauren and I tried to talk about the future a bit. They need to do a bone marrow biopsy to see if the PTLD is in her marrow and want to do it tomorrow. That result determines what options or treatment plans lie ahead. Not a horrible procedure, but it is done under general anesthesia plus she isn't moving real well yet, which is upsetting. Consenting to that in a way means you deal with the fact that you probably have cancer. So, she needed to decide what to do. It is so tough to watch your kids suffer and ask hard questions and not be able to do much to help take away the pain.

She had the drainage tube removed from her nose this morning and walked to the bathroom. They like you to get up and moving quickly after surgery, so we walked her around a bit this afternoon and she had some ice chips. They started some steroids to help the inflammation and hopefully the pain. That seems to be making her more comfortable.

I was home late last night and this morning. I feel so full of faith and hope and confidence after listening to the past 2 days of conference. There is a lot of raw emotion in this hospital room, though. I enjoyed my walk outside, I played the piano for awhile and made some homemade rolls. It is therapeutic to cook when you haven't lately.

The house is so quiet without the kids home. I really miss them and can't wait to see them! Blair is excited to pick them up Tues night, then bring them here so they can see lauren, then I will take them home while he stays here. He is taking the day off on Wed so I can do my normal mom stuff and help them with some projects, etc. We will switch again so he can have fun with them Thurs after work.

Resting more peacefully

Lauren finally slept peacefully for a while today after a rough night. There was much discussion and many somber faces after surgery yesterday. The oncologist came in to tell Lauren of their cancer suspicions at about 7pm.

Rachel, Megan and Nathan are having a fabulous time on their trip. They went bowling, drove and played up the canyon, wandered BYU, did a high ropes course, went to a BYU volleyball game, have played with lots of cousins, had delicious food, toured the art museum, been spoiled by Aunts and Uncles and probably many other things they haven't shared with me.

Blair worked in the morning yesterday and was here in time to see Lauren before they took her back to the OR. We usually get bad news on our own, so it was nice to be together!

To answer a few questions - the bowel section wasn't removed for 2 reasons. It sits too close to the stomach. There is a certain centimeter threshold the surgeons don't pass (I can't remember the number) because healing is too difficult at that point. They would be forced to remove if the bowel was obstructed, but it would be risky. The other reason is because of the extent of damage and the suspicion of the cancer. Chemo or other treatments couldn't begin until at least 2 weeks after the surgery if the bowel was removed. I reminded the surgeon that many people were praying that she would be guided and would know what to do with whatever she found once she opened Lauren up. I feel like that prayer was answered and that she made the right decision.

Another question regarding the doctors we are dealing with. We have a large group of doctors from many different specialties here at Childrens' who have been working on Lauren. She needs to be treated at a heart transplant center because everything she is treated for is affected by all her heart meds and her heart condition. This particular oncologist is a specialist in PTLD. It is hard to understand what has taken so long to get a diagnosis, but it is not the fault of the docs. Lauren's body just does an excellent job of masking the real issues. It always has. We are confident she is in good hands.

Disappointing news...

Around 3pm this afternoon, as we were anxiously waiting for word from the OR, we saw the surgeon walking toward us and we could tell she was not bringing happy news based on the look on her face. As she began to explain what they saw inside Lauren, our hearts dropped and we became sad as the reality of what she was saying started to sink in.

The issue causing her pain is a very sick and "angry and ugly" portion of her bowel. That particular section of bowel is about 9-10 inches long, is enlarged in areas and narrowed in others, and is not far below her stomach. It is sick enough that it is very stiff and they couldn't even move it, and didn't dare move it. They were considering removing that section of bowel but felt that it would be unsafe for Lauren to do that. So, Lauren came out of surgery with the same pain in her abdomen, minus her appendix and a few lymphnodes that they removed to biopsy, plus the pain of being cut open.

We need to wait for the final pathology report to come back, but it appears that the issue is consistent with the cancer Lauren has had before. Her increaesd pain is being managed so she is comfortable and sleeping at the moment. We are just waiting.

Patiently waiting...

Blair & Renee

11:45 am Friday

Anesthesia just took Lauren in for surgery. She needed 2 units of blood last night and has been vomiting, so the timing is good. Surgery will take at least a couple of hours.