How we respond is a CHOICE....

     I almost called this post; "This too shall pass....second time". I realized I have already used this title. But, I feel like we are on a merry go round. Been there, done that. Here we go again.
     Last Thursday, we went in for early morning clinic. I was SO ready to be going home on Saturday. I had even posted it on Facebook (you know, it's offical there), only to be disappointed when instead of being released, Gus was RE-ADMITTED to the hospital. He was having lower GI challenges and all the week since being released the first time, he was going into outpatient clinic getting fluids pumped into him. In so doing, it threw off his sodium, potassium and other electolytes. So they admitted him to balance everything out again. I had to leave the hospital, go back to Hope Lodge, pack a bag of clothes for us and return to the hospital. The rules at Hope Lodge is that the caregiver can not stay there unless the patient is with them. So, back to the hospital I went to sleep on the couch in his room. However, I do have to admit, that it is actually pretty comfortable for being a couch.
     We stayed three nights, Thursday night to Sunday morning and they are ready to release him. They said there was 'no medical reason to keep him'.  I wanted to stay one more night because he has a 7 am. clinic appointment on Monday morning and then a possible Radiology appointment to pull his chest port out. I was a little frustrated.His lower GI problem has not been resolved but I guess that didn't matter to the rounding physician.  We made it back to the Lodge and within 40 minutes, he was throwing up again. He has just rested the rest of this afternoon and hopefully, by clinic time in the morning, he wont be dehydrated again.
     I know there is a lesson for me to learn in all of this someplace.
Elder Dallin H. Oaks has taught: "Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a 'healing' cures our illness or lifts our burden. But sometimes we are 'healed' by given strength to bear the burdens placed upon us.  In Alma, they 'did pour out their hearts to Him in regards to their challenges. In response to their faith and silent prayers, the Lord responded: "Be of good comfort....I will....ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs."  Whatever change in life's circumstance may come our way, and whatever unexpected path we may have to travel, how we respond is a choice. Turning to the Savior and grasping His outstretched are is ALWAYS our best option.
     Elder Richard G. SCott taught this eternal truth: "True enduring happiness with the accompanying strength, courage, and capacity to overcome the most challenging difficulties comes from a life centered in Jesus Christ....There is no guarantee of overnight results, but there is absolute assurance that , in the Lord's time, solutions will come, peace will prevail and emptiness will be filled."
     This is the lesson to myself. Even though I missed the visit from my mom from Fla. and I missed my son, Adam's, 18th Birthday, I will at one point get to make that time up again. I was needed to be with Gus at Huntsman. Even though, the journey has been long and I am soooooo tired, I need to strengthen my faith and leave my burdens at the feet of Christ. I know that He will strenghten me.
     Even though at moments, I have been a bit grouchy, this too shall pass.....a second time. And how I respond is a choice....MY choice.....
     Thanks for traveling this journey with me.

30 days since stem cell transplant.............This is suppose to be the 'magical' number. 

I wanted to add this article to my blog. This is a REAL thing. And Gus has it already. I really do have to watch him like a toddler. Today in clinic, I had to remind him to put on his shoes. Yesterday, he left the orange juice out on the community counter (where you share foods if you want to).

We have joked about chemo brain, but it really is a 'thiing'. He found this paper yesterday, in the cancer library here at the lodge. I wanted to include it because our friends and family need to understand what he is going through. He isn't being an 'air head'. The chemicals in the chemo really do fog the brain. 

So, this is my serious post for the day. 

Side note: Gus was seen in clinic today again. He has lost more weight. He is now 150 lbs. He received one liter of fluids. The PA told him he needed more sodium so we stopped and picked up some gatorade. He has been drinking it but diluted it down. The dr said 'no-go'. He needs the salt. So, full strength it is. 

We are back from clinic, had lunch, and he is now laying down. It really does wear him out to go back to the hospital for outpatient clinic. I know we are not suppose to compare, but we talked with a guy yesterday that had an 'allo' transplant. That is one from a donor. He is about 60 days out. Those people have to be here 100 days before being released. This guy was already walking up to 8 miles a DAY. Our jaws dropped. Gus is only 21 days post transplant( he is an 'auto' used his own stem cells) and he still has very little engery. The added fluids are helping but he is a bit slow to recover. Some of this is due to his pneumonia and the high dose of antiobiotic he has to take. BUT, like the Doctor tells us 'just take ONE day at a time'.

So we are.....

I hope you enjoy this article......

Chemo Brain

This information is about adults with cancer. To learn more about the effects of cancer treatments in children (including brain problems), see Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

For years people with cancer have worried about, joked about, and been frustrated by the mental cloudiness they sometimes notice before, during, and after cancer treatment. Even though its exact cause isn’t known, and it can happen at any time when you have cancer, this mental fog is commonly called chemo brain.

The sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. They might last a short time, or they might go on for years. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. Chemo brain affects everyday life for many people with cancer.

What is chemo brain?

Here are just a few examples of what patients call chemo brain:

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details like names, dates, and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they’re less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)

Doctors and researchers call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills

How long chemo brain lasts is a major factor in how much it affects a person’s life. When it starts, how long it lasts, and how much trouble it causes can vary a lot.

For most people, brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them might not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people don’t tell their cancer care team about this problem until it affects their everyday life.

What causes chemo brain?

Beyond the chemo brain symptoms that start during and just after treatment, there are some cases where brain symptoms start and even get worse after treatment is over. Many cancer treatments, including certain kinds of chemo and radiation, can cause short-term, long-term, and delayed problems.

Studies suggest that there may be more than one cause of chemo brain, especially for the short-term symptoms. Some people with cancer have very real brain problems even though they haven’t had chemo. Still others notice problems when getting hormone treatments, such as those used to treat breast or prostate cancers. For some, problems start after surgery. Along with chemo, many different things can worsen brain function.

For instance, brain function problems could be caused or worsened by any one or any combination of these factors:

• The cancer itself
• Other drugs used as part of treatment, such as steroids, anti-nausea, or pain medicines
• Surgery and the drugs used during surgery (anesthesia)
• Low blood counts
• Sleep problems
• Infection
• Tiredness (fatigue)
• Hormone changes or hormone treatments
• Other illnesses, such as diabetes or high blood pressure
• Nutritional deficiencies
• Patient age
• Depression
• Stress, anxiety, worry, or other emotional pressure

Most of these cause short-term problems, and get better as the underlying problem is treated or goes away. A few, such as depression, can cause long-lasting brain problems unless the cause is treated.

What can you do to manage chemo brain?

Day-to-day coping

Experts have been studying memory for a long time. There are many things that you can do to help you sharpen your mental abilities and manage chemo brain. Some examples are:

• Use a detailed daily planner or your smart phone. Keeping everything in one place makes it easier to find the reminders you may need. You might want to keep track of appointments and schedules, “to do” lists, important dates, websites, phone numbers and addresses, meeting notes, and even movies you’d like to see or books you’d like to read.
• Exercise your brain. Take a class, do word puzzles, or learn a new language.
• Get enough rest and sleep.
• Move your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue).
• Eat veggies. Studies have shown that eating more vegetables is linked to keeping brain power as people age.
• Set up and follow routines. Try to keep the same daily schedule.
• Pick a certain place for commonly lost objects (like keys) and put them there each time.
• Don’t try to multi-task. Focus on one thing at a time.
• Ask for help when you need it. Friends and loved ones can help with daily tasks to cut down on distractions and help you save mental energy.
• Track your memory problems. Keep a diary of when you notice problems and what’s going on at the time. Medicines taken, time of day, and the situation you’re in might help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare. You’ll know to avoid planning important conversations or appointments during those times. This record will also be useful when you talk with your doctor about these problems.
• Try not to focus on how much these symptoms bother you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can’t control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.

Tell others

Another thing you can do to better manage chemo brain is tell family, friends, and your cancer care team about it. Let them know what you’re going through. You may feel relieved once you tell people about the problems you sometimes have with your memory or thinking.

You’re not stupid or crazy – chemo brain is a side effect you can learn to manage. Even though this isn’t a change that’s easy to see, like hair loss or skin changes, your family and friends might have noticed some things and may even have some helpful suggestions. For instance, your partner might notice that when you’re rushed, you have more trouble finding things.

Tell your friends and family members what they can do to help. Their support and understanding can help you relax and make it easier for you to focus and process information.

Talk with your doctor or cancer care team

If brain problems cause trouble at work, talk with your doctor to try and pinpoint what’s causing your brain fog and what can be done about it. This is especially important for people with chemo brain that lasts more than a year and keeps causing trouble in their daily lives.

It helps a lot if you have a diary or log of the situations you have trouble with. It also helps to know some of the things that make the problem worse or better. For instance, are they worse in the morning or evening? Do you have more trouble when you are hungry or tired? Does it help to nap, walk, or have a snack? Your doctor will want to know when the problems started and how they affect your daily life.

• Write down questions about the problems you have. Take them to your appointment along with your memory tracking log to talk over with your doctor. Ask what may be causing the problems, and find out if there’s anything the doctor can offer to help you.
• Bring a list of all the medicines you take, including herbs, vitamins, supplements, and those you take on an “as needed” basis.
• Take a friend or family member with you to help you keep track of what’s said during the visit. They can also describe the changes they see if the doctor wants a different viewpoint of how your brain problems are affecting you.
• If your memory and thinking problems keep causing trouble in your daily life, ask your doctor if you might be helped by a specialist such as a neuropsychologist or a speech language pathologist. These professionals can test you and may recommend ways to help you better handle the problems. (You may hear this called cognitive rehabilitation.)

You may need to visit a larger hospital or cancer care center to find experts on testing brain function, including chemo brain. Ask if you can get a referral to one of these specialists who can help you learn the scope of your problem and work with you on ways to manage it. You’ll want to find out what your insurance will cover before you start.

Questions to ask your doctor

These are just some of the questions you may want to ask your doctor about chemo brain.

• Are there other medical problems that could be causing my symptoms?
• Is there treatment for my symptoms?
• What can I do to manage chemo brain?
• Is there anything I can do to help prevent chemo brain?
• Should I see a specialist? Can you recommend one?

Can chemo brain be prevented?

So far, there is no known way to prevent chemo brain. For some people, treating their cancer will mean trouble with thinking, memory, planning, and finding the right words.

The causes of brain problems related to cancer and its treatment are still being studied. Chemo brain seems to happen more often with high doses of chemo, and is more likely if the brain is also treated with radiation. But because chemo brain is usually mild and most often goes away in time, chemo that’s proven to work against the cancer should not be changed to try to prevent this side effect.

What’s being done about chemo brain?

Studies are being done to learn more about chemo brain. Some studies are looking to find out which chemo drugs and other treatments are more closely linked to chemo brain. Researchers are also looking at possible ways to prevent brain problems. For instance, there may be certain drugs that can help protect the brain during cancer treatment.

Researchers are studying other aspects of cancer treatment that may lead to long-term mental changes, too. For example, they are looking at the types and doses of chemo the patients had, anemia, other cancer-related symptoms (like tiredness), and genetic differences among people to see if these factors are linked to a higher risk of brain problems.

Doctors are also studying ways to help survivors who are still having trouble thinking.

• Written by
• References

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Why, Noah brought it with him on the Ark!

Sat. Feb. 17, 2018
      Have you ever been sitting in church and you get the giggles and you can't stop laughing NO matter how hard you try. Well that happened to me yesterday in clinic. Our nurse, Natalie, was getting ready to draw Gus' labs (blood) and his cell phone started ringing. He said that he better get that. So, I was sitting there looking at something on my phone while he struggled to dig his phone out of his vest jacket. All of a sudden, I heard Natalie express so sincerely " Where in the World did you get THAT?" The tone of her voice was almost one of amazement. I looked up to see what was SO astonishing to her. I looked at what she was looking at and then we both burst into laughter. She was  referring to Gus' dinosaur-type flip phone. Between bouts of laughter, I said." Noah brought it with him on the Ark." Well, we couldn't stop laughing. All the while, Gus didn't crack a bit. Then more stoic he was, the more we laughed. We couldn't stop. I told her that we often referred to his phone as the 'paper weight' because he so seldom uses it. I know it was one of those situations where 'you had to be there' but we giggled like school girls. I guess we both needed that.

     The nurses, that we have been in contact with every step of this journey, have been absolutely amazing. Each one has a positive attitude and are extremely talented in their area of service.  Their personalities have been what we needed at that very moment.
     The day before, we had a nurse named Robin. She brought over the 'Parents" magazine and said 'would you like to see my granddaughter?". On the cover of the magazine, was her daughter in law and granddaughter. Her d.i.l is heading to the para-Olympics. She is a cancer survivor, but lost her leg in the process. This beautiful girl also posed for the Swimsuit Ed. of Sports Illustrated.  I won't post any of those photos, but I have to say she is beautiful. I am excited to watch for her in the para-Olympics. I will post her name by the photos. It is amazing that cancer CAN'T stop you if you want to keep going. What an inspiration story this gal has. Of course, Robin is a proud grandma and mother in law.

Watch for her to compete......

Today is Sat. Feb 17. ( entry from my Facebook page) It has been SO nice to have a day 'off' from clinic. I have been able to get the wash done and we have eaten two meals on time already today. It is nice to be able to get on the correct schedule with the medications and meals. We can hang out at the lodge and just catch up on those things that have fallen behind in. 6 pm and we are already exhausted. Day 2 being out of the hospital and Gus has had two days in the outpatient infusion clinic receiving more electrolytes. Yesterday he got one bag, today he got two. He has been dehyrated due to nausea challenges. He has lost 4 more pounds in two days. Hopefully, with the added anti-nausea meds and these IV's, he will be perking up soon. We go back tomorrow for another round. Hopefully,that will be enough to give us the weekend 'off'. I have a dual role. One minute I am the cheerleader and the next minute I am the dicator, telling him to eat or drink etc. Someone has to be the boss. LOL. On a positive note, my MOM has been able to fly in and be with Adam for a while. I am SO grateful for this. Adam has been a trooper but the stress is really getting to him. We had a phone conference with the school today and are making a few more changes in his class schedule. Hopefully, this will be the trick....more on line classes and less in school classes.

    Day Plus 21. ( Facebook entry) Labs are looking a bit better today. Gus only had to have one liter of fluids, he didn't loose any weight, first day in a looooong time that he hasn't. He is down a total of 32 pounds. And he was skinny to begin with. He was able to stop one more medicine today. The count is 12 down to 11 but one more pill gone helps. He has been able to hold down food and has eaten 1025 calories today. He got a pretty good nap in while he received his fluids. Hoorah!!!! He hasn't ran a fever, he is able to keep his bald head warm and he still has a great attitude. And the good news to us is, we don't have to go back to clinic until Sunday morning!!!! We have a day off tomorrow!!!!! Another hurrah!!!!! I can get our wash done. LOL

I tried out the Smith's "grocery store shop online and pick up" option. I have to say I was quite impressed. Since Gus can't be out in crowds yet and I don't like going alone with everything going on, this was a perfect solution. I ordered on line, chose a pick up time, received an email, and was there and back in 15 minutes. They bring everything out and load it into my car.

We continually feel the blessing from all the prayers being offered. I am SO grateful for faithful friends........

Feb. 15, day plus 20:

6 pm and we are already exhausted. Day 2 being out of the hospital and Gus has had two days in the outpatient infusion clinic receiving more electrolytes. Yesterday he got one bag, today he got two. He has been dehydrated due to nausea challenges. He has lost 4 more pounds in two days. Hopefully, with the added anti-nausea meds and these IV's, he will be perking up soon. We go back tomorrow for another round. Hopefully,that will be enough to give us the weekend 'off'. I have a dual role. One minute I am the cheerleader and the next minute I am the dictator, telling him to eat or drink etc. Someone has to be the boss. LOL. On a positive note, my MOM has been able to fly in and be with Adam for a while. I am SO grateful for this. Adam has been a trooper but the stress is really getting to him. We had a phone conference with the school today and are making a few more changes in his class schedule. Hopefully, this will be the trick....more on line classes and less in school classes.

Gus was so tired and weak, he had to lay down. We found out he was dehydrated and needed fluids. Two bags did the trick. 

Congratulations...you have a newborn......

     We were  released yesterday, Feb. 13th from the hospital. We had spent 19 days there. The Nurses were my angels in white coats...and sometimes blue plastic draps, gloves, and masks, depending upon the many times Gus was placed on germ alert. When this happened, everyone that entered into the room had to take precautions.
     I had to take a 'discharge care givers' class. The information is overwhleming but thank goodness, I was given handouts to go in the three ring binder they gave us on the class before admission.
     I have to admit the goodbyes were filled with smiles and tears. You don't spend 24/7 for 19 days without forming some intimate relationships. These nurses held my hand when I couldn't handle some things like  poop, vomit, and other strange odors that made me gag and leave the room. They took care of Gus like amazing nurses do. They didn't let anything bother them. They were so caring and giving.. We told them over and over again how much we appreciated them and how much we will miss them.
     The main thing the nurse, Kriss, explained to me very firmly is that " YOU ARE NOW TAKING HOME A NEWBORN BABY".....or at least think of things that way now. Gus has a completely new immune system that is still very weak.  It is still growing and recovering so there are a lot of precautions he still has to take. He has to wear a mask any time he steps out the door of our room. He washes his hand multiple times a day. She told me that I was now to become a GERM-a-PHOBIC. Everything gets wiped down multiple times a day with Lysol wipes. He can not eat out. He has to have foods that are only pasteurized. It took me almost 90 minutes to grocery shop last night because I was reading so many labels. Besides, he is still having problems eating and holding down foods, so I am looking for high caloric and small, frequent meals. It is a challenge. Ensure has become our best friend. He must protect himself from germs, molds, bugs, viruses, and every other micro thing we can't see.  Hehehee.... OK, that is the way that it feels.
     I should also update that Gus had to have a brococopsy done of his lungs. It is like a colonoscopy except they go into the lungs down the throat/wind pipe. It was not a very comfortable procedure but he endured it.  We found out that he has Pneumocystis Pneumonia, also called PCP. It is rare but it sometimes does happen with Transplant patients. It can be treated with a high dose antiobiotic for a long time.  Gus has such a long medication list, I had to make a spread sheet to keep track of everything.
     I forgot to add in that when we got all of our stuff back down to the car, our car wouldn't start. We had to have the security guard come and give us a jump start. I thought that I was being helpful that everytime I had to go down to the car, in the underground parking garage, I would start if for a few seconds to make sure it would start. Since, we were parked under ground, I didn't want to run it too long because of the fumes. Hence, I drained the battery Gus said. Thank goodness for the security guard.

     Today, Feb, 14th, he had to follow up in clinic. Gus was very weak and had to use my walker to sit on once. After he got his initial lab work done, the results came back that he was dehydrated. We then had to go over to the infusion clinic where he received a bag of fluids. He felt a bit stronger after the IV and we returned 'home' to the lodge. He will follow up again tomorrow with some more labs and more IV fluids. 

    At the lodge, they had a musician named Jim Jensen, from Logan Utah, come in and play some music on his accordian, they had sugar cookies out that we could decorate and some one brought in dozens of bouquet of flowers for the residents here. I took a picture of them because we can not have any live flowers in our room around Gus at this time. The Jim that played gave Gus a music CD of his.
It has been a very different "Valentine's Day' but it is what it is.
     My mom will be flying in from Fla tomorrow to spend a few days with Adam. I am thrilled about that. Adam is struggling being alone. He says he is OK, but he has skipped about 50% of his classes since we have left. Not a great way to make it to graduation. I think that it will help to have my mom there for a while and then we will be hoome not far behond after she leaves. I will miss not seeing her but I am grateful that she will be with Adam.
     I know this blog is all over the place. I am very tired and it shows in my writings. We will get on a better schedule now that we are back at the lodge and only going in to the clinic for outpatient follow ups.
      I think this brings me back up to date. I better get back to my 'Newborn' who now has a 19 old day immune system.......
     Enjoy these pictures ..

Waiting for the security guard to come help us with the car.

Shay, Gus and Kriss......only two of our wonderful nurses. 

Chidi and Gus. She was our nurse during the transplant and was extremely good when Gus' blood pressure started going all of the map. She was calm and kept us calm too. 

 Flowers passed out at the Lodge for Valentine's Day. I took a picture since we can't have them around Gus at this time.

A final shot of the room before we left. 

Waiting for a bed at the new infusion Clinic. Gus was hardly able to keep going. I call this shot "my newborn". !

   

This is my spread sheet for three day's worth of medications. I made  this up for 4 weeks. 

Jim Jensen. The guest musician at the Lodge today. 

This too shall pass.....Just Keep the Faith

This has been a nice Sunday for being in the hospital. Our mid-morning started off with having a sweet, Couple from the Huntsman Branch come in a offer us the sacrament. They were Brad and Emily. Emily was originally from Washington City and Brad went to Dixie High. It was fun to talk football and make some connections. Then Brad looked down at dad's blanket and saw a picture of the Brazil flag. He exclaimed that he served his missoin there and with further discussion found out he served just below where Matthew is serving now. Very small world. After receiving the sacrament, Gus asked Brad for a blessing. I was proud of this young man for being prepared to do so on a moments notice. He gave Gus a very conforting blessing, one that Gus needed for today going into a echcardiogram to check to see if his heart was damaged by the chemo. It was a very sacred morning having these two sweet people come into our room.
     In the early afternoon, Stephen, the cardio tech came in. He got Gus set up for the echo. During the conversation, the talk lead to airplane and a marine base by Gus' elementary school and WaaLaa!!! This tech was from Kaneohe, Hawaii. This town is next door to Gus' hometown of Kailua Hawaii. He knew all about everything and anything Gus said.  For the next hour, they 'talked story' all about Hawaii and these two neighboring towns and all the on goings and growth. It was a delight to have Stephen in our room. It was a feeling of 'home' for one hour.

     We are still waiting for more test results. Everyone still has to dress in plastic garb to come into our room. We are hoping that will be lifted tonight pending some more results. Gus' fever has been down today, and his blood pressure is coming down. He is still on oxygen. Gus was given some steriods this morning and that medication seems to be a lot of help with some of the side effects Gus has.
      I have to say as day 'plus 16' comes to an end, this has been a pleasant day. We count our many, many blessing and tender mercies we receive, and we feel those are a result from the faith and prayers of those that are offering them in our behalf. Thank you again.
     I know that 'this too shall pass.....especially if we just keep the faith.".  Sent with love and gratitude.........CaroLee

   

The Pizza Made me Cry...

     We have made it to the end of day 12. Days 9 and 10 were a nightmare!! Gus had ran a fever for three days and we never thought we would see it break. Finally, after getting some steriods, the fever broke. He had what the Dr. called 'engraftment syndrome'. The body  reacts as the stem cells  start to reproduce again. His white blood cells are starting to rise again. They are now at 50 % of where they need to be. Two bags of platelets helped bring those up. Today he received two bags of whole blood. That helped bring his hemaglobin up. He is still on a soft to liquid diet. He is trying hard to hold down all the 'food' he can with the use of anti-nausea meds.
     The hardest thing on Tuesday happened. He woke up with handfull of hair coming out. He knew it was coming but the reality of it was here. Our sweet HCA, Shay, came in with the hair shears and took care of what was left. When Gus first saw himself, he was shocked, and cried. It was just too much. He said he hadn't been that bald at boot camp.  He is still trying to get use to it.
     Wednesday, today, was hard on my heart. Adam is struggling a bit at school. I have asked a lot from him to be at home alone, to take care of the house, to go to school, to care for the dogs and go to work almost every day.  That is a lot for a soon-to-be 18 year old. This after noon our neighbor, Kathy, wrote me a message asking what type of pizza Adam liked. Adam is a very picky eater so he has learned to all of his own grocery shopping and meal preparation. He does a really good job at it too. But tonight Kathy surprised Adam , right when he got home from work, with a pizza. Adam was SO grateful. He told me over and over again how much it helped. Adam had come home from school today with a stomach ache and I know he is worn out from all the responsibilities. I was so touched by Kathy's ability to sense tht Adam needed a mom and she stepped in for a few minutes to help out. It had made Adam's night. And of course, Gus and I were very grateful. So grateful that we cried. Who knew that a pizza could make us cry? We continue to recognize the tender mercies that we are blessed with.

Dr. Zander and his medical student come in every morning to visit Gus.

 No hair Gus.

It was cold so Gus put on a beenie.

It was tough to see himself the first time without hair. 

Shay doing the cutting. In the background is the social worker and the dietitian that come in every day to see Gus. 

 Medical Students

AND the beautiful pizza that made me CRY!!!!!!.
   

The Ranch dressing Made me Cry

     Today we are day plus 8 from transplant day. Gus has 'hit the bottom' with his White blood cells, which means two things :1: He is below exhausted....nothing to help him 'go' except pure will power and 2). it is ONLY uphill from here.
     We DO feel the blessings of the MANY prayers that are being offered. We have been blessed with the best nurses EVERY shift. It seems as if we get the ones that he just needs that day. He is still exhausted BUT he is being the ideal patient. Even in the depth of his exhaustion, he gets up every day and rides the bike that is in his room, and he will walk the halls 3-5 times a day, he is trying to drink the needed amount of water so he doesn't have to be given extra fluids in his I.V. and he is consuming enough calories thru milkshakes, Ensure and protein powders. He doesn't do too well with solids yet as vomiting seems to be a side effect of eating solids. Despite ALL this, the Doctor and the Nurses are always giving him TWO thumbs up for all his hard work and efforts.
    We pray continually. We feel that Angels are attending him as he walks the halls. We feel that they are holding him up because everyone else we see in the halls walking has to have someone  with them. When he is sick to his stomach, it seems as if the nurses know to come in just at 'that moment' and are able to give him the needed medication to stop the vomiting. He has lost 19 pounds but the last few days it has stayed the same. That is good news. The weight will come back after we get home.
    Some have asked how I am doing. It is hard to complain when I see what Gus is going through. I am grateful to be here. The couch that I sleep on is very comfortable. The nursing staff is good to me too, always bringing me ice water when they bring it to Gus. The other night, we were both struggling and we had called 'room service' late for our dinner. Because of Gus' extra senitivity to smells right now, I am careful not to eat anything in the room that puts off any type of smell, like fried foods, etc. The other night I had hurried and called in a chef salad with a roll and butter.  After I had called it in, I realized that I had forgotten to order the salad dressing. Everything is al la carte so you HAVE to order every little thing. I was mad at myself for forgetting the dressing. It had been a stressful night and I was trying to do a lot and the dressing just 'slipped my mind'. Well......when food services showed up and brought me my tray, they had place TWO RANCH dressings on there. They said to me; 'you always order the ranch with your salad and when you didn't, we just brought it anyway.".  Of course, my emotions have been all over the map and I burst into TEARS!!!! I thanked them SO MUCH for caring enough about ME and caring enough and knowing what I normally order that they completed it for me. I thanked them because they see me as a person, a care giver that is given out. Their small act of kindness was the BIGGEST act to me. We told them that their service was truly an act of chairty. Not just a job they have to get done........It was another tender mercy for us......
     Who knew ranch dressing could make me cry.......

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