Friday, April 29, 2011
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.
Tuesday, April 26, 2011
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.
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.
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!
Saturday, April 23, 2011
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!
Friday, April 22, 2011
Wednesday, April 20, 2011
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.
Sunday, April 17, 2011
Wednesday, April 13, 2011
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.
Tuesday, April 12, 2011
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.
Monday, April 11, 2011
Sunday, April 10, 2011
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.
Saturday, April 9, 2011
Friday, April 8, 2011
Thursday, April 7, 2011
(this blog needed a little more happy news anyway...)
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.
Wednesday, April 6, 2011
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!
Tuesday, April 5, 2011
Monday, April 4, 2011
Sunday, April 3, 2011
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.
Saturday, April 2, 2011
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.
Friday, April 1, 2011
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.
Blair & Renee