2010

Wahoo! We made it through our last day of chemo. Bridger broke out with the rash again. This time it was mostly on his arms and legs. Today he watched cartoons and laid in bed for majority of the day. He threw up once around 8 and has started a slight cough. I am a little stressed about the cough. But we will count our blessings thus far and hope for the best to come.

For some comic relief
During our last hospital stay my dear Relief Society sisters put together a bag with some goodies, books, my now favorite Jamie’s, and a Hymn book (Hymns of the church of Jesus Christ of Later Day Saints) and much more. The Hymn book is one thing that calmed me down and helped me feel peace during that awful time. I would softly sing or hum the songs to Bridger while he was unconscious. So it was one of the first things on the packing list for this visit. Last night after Blake left and Bridger was almost asleep. I got out Hymns and stared to sing. I sang for several minutes pausing whenever a nurse came in. (I do not sing in public, and I hardly sing next to Blake at church I won’t even sing in he car in case some one some how could hear me) While I was thoroughly enjoying the songs trying to memorize some that I didn’t know. I looked down beside me at Bridger thinking I would find a peaceful sleeping boy. In stead he was on his left side turned away form me. And with the palm of his hand he had folded over his right ear and was mashing it down. I don’t know how long his little arm had been holding it there. I began to laugh and said to you want me to stop? He slightly shook his head yes. I guess I will try humming next time, and add the unconscious to my do not sing in front of list.

I can’t believe we only have one more day of chemo left. It has gone by so fast. Bridger had another great day, although he was a little home sick. First thing this morning he asked “when do get to leave this hospital?”. I said not for a long time. He was kind of sober through the day. I think getting some extra doses of Benadryl caused some of his soberness. The rash on his face came back during his 4 hour long chemo treatment, so they gave him Benadryl every two hours which helped. He still has some redness, but is breathing fine. Bridger even ate a little more today than yesterday and kept it all down.

Tonight was a very hard night. Blake had to go back home to work. About an hour before Blake left Bridger looked at him and said “Good bye dad. I’m going to miss you”. His blue eye filled with tears for a moment. When it was time for him to go. Blake offered a family prayer and we gave lots of hugs and kisses. By this point tears were in all our eyes and falling down my cheeks. The funny thing is, he is most likely coming back on Wednesday for transplant day. I watched him go from behind the double doors out side of our room when he got to the end of the hallway he turned back to get one more look. I waved goodbye through the windows just like I do at home every morning when he leaves to work. I will be praying for his safety while he is away. Goodbyes are hard. It’s times like this when I am so grateful that we will always be able to be an Eternal family and live together for ever. What a wonderful gift from hour Heavenly Father.

Last night was unexpected; Bridger really meant what he said when he told us that he felt all better. He got up and we played catch with a football. He kept down some water and animal crackers and when it was time for bed, he was wide awake. There was a constant beeping from the med pumps that didn’t quite have the lullaby effect on him. He ended staying up until 3:00 am. In the end it was probably better because he had to go the bathroom every 2 hours to protect his bladder from the chemo. Blake was such a wonderful dad and watched Incredibles with him and rubbed his back for quite a long time.

Today the chemo didn’t have any of the same effects as yesterday. No fever or upset stomach. His heart rate and blood pressure even stayed perfect. However, later in the day he did start to get hives on the right side of his face. The nurse gave him a quick dose of Benadryl and the itching stopped and the hives disappeared. Bridger has eaten little snacks here and there and even had a hot dog for dinner! We are so thankful he is doing so well. Thanks again for all your prayers.

“It’s beginning to look a lot like Christmas” around his room. Not only has Bridger been humming Christmas songs off and on, we have been showered with gifts, love, and support ever since we cheeked in to the hospital. Today yet another wonderful group of people, from the DEC Your Room charity, brought a Wall-E bed spread, body pillow, more toys, movies, tooth brushes, a wall-E throw blanked, robot wall stickers and a Nintendo DS with two games. At this point I thought Santa should have signed a non-compete waver. As far as presents are concerned, Christmas is going to pale in comparison to this first week in the hospital. People have been very generous and it really has kept Bridger’s spirits high.


The bedspread really makes the room a lot softer and comfortable.

This morning I went for a jog. It was a beautiful path with large trees on both sides that canopied over it. (Don’t worry mom there was a ton of other joggers, and walkers, almost too many. There was also plenty of medical staff between the hospital and the path.) As soon as I got back to the room Bridger peaked his bright eyes out from under his covers and in a whisper said “Hi mom, the nurse snuck in here with out waking dad up. Giggle, giggle”. We then rushed to give him a bath because he had to have an EKG done before he could have his new chemo which was in 30 min. We made it just in time. He even got a little bit of bacon down before we started the chemo. The new chemo started at 11:00am. It made him real sick almost instantly and he was puking by noon. It has been constant regardless of the anti nausea meds. He is really being a trooper and hasn’t even let out one complaint. He watched a cartoon for the first hour and fought to stay awake (they gave him some meds that make you sleepy). The nurses were surprised he held on so long. On the second go around of Star Wars: The Clone Wars – Episodes 1 – 4, we had to put the show on pause for some reason and before I could say, “I love you”, he was asleep. He has been trying to sleep ever since. But with this particular chemo it has a lot of side affects and allergies. They constantly monitor his heart rate, respirations, blood pressure and oxygen saturation. All these levels were going out of wack at some time or another. He spiked a fever and they had to continually make adjustments to medications to help regulate his fever and take precautions for potential infections. I was really scared once when his hands broke out with a rash. The rash seemed to concentrate in areas that were affected last year when he was in the hospital with septic shock. Luckily the rash ended up going away about 30 minutes later and was just one of the side affects from the chemo. The experience has brought some old emotions back. I told the nurse I could handle all the puking, fevers, and blood and platelet transfusions, but I didn’t think I could handle Bridger going through septic shock again. As I’m writing this, Bridger just woke up and said, “I’m feeling better mom.” He’s now eating ice chips and sucking on a sucker. Next chemo is at 8 pm. Wish us luck.
Bridger playing Video games a couple of days ago.


Bridger in the morning before chemo.

Our room

Bridger During chemo.

We had a great day yesterday. We were introduced to His Grace Foundation. They are a charitable organization that has adopted the BMT unit. This foundation was started by a couple whose daughter had a Bone marrow transplant here at TCH. She is now 17 and doing great. While they were here they saw the needs of families and now provided services to fill those needs. They do such things as: Host catered dinners twice a month, provided parking passes (parking is $12 a day)for the duration of your stay, go shopping at Walmart once a week for families with $25.00 limit, offer massage therapy once a week, provide child sitting services and give people emotional support and serve however they can. All their volunteers go through special training and are well versed in how to respond to families in our situation. Two volunteers came by yesterday and met us for the first time. They brought us a huge basket with lots or toys, blankets, magazines, toiletries, and snack food. They also gave us a laundry basket, hangers, soaps, and a small pillow. I was so surprised at how many thoughtful gifts were in the basket. We heard they would bring a basket but we didn't think it would be so large. What a great foundation, started by some special, inspiring people.

Between the basket of toys and all the stuff in the play room we had a fun filled day. Bridger's favorite was a yellow squishy ball and a finger bowling set. He was happy and full of energy all day.

Gifts from His Grace Foundation

Maybe Bridger will take after his Pap's In WY who Bowl on a league.
It's all in the form.

From the sounds of it we only have one more “good” day left. On Friday Bridger will start his big doses of 3 to 4 different kinds of chemo. Yes, all in one day, rotating around the clock for four consecutive days. Thankfully we made it through another uneventful day today. They drew his labs again every 30 min until 2:00pm to make sure the med levels are all correct. Bridger was very happy playing his video games, but not happy when I made him go over some school work. I won’t be so mean tomorrow. I was just trying to break up the day with some different activities.

When helping Bridger use the restroom, I have been instructed to use gloves as a precaution because his body releases the chemo, which is still very dangerous if it touches your skin. It is a sad reminder of the harsh chemicals that his little body is being flooded with. We are ecstatic that Bridger still feels so good. I have no doubt it must be all the prayers being answered. Still we can't help but wonder how he will do over the weekend.

Heres a short list of some of the small joys of our hospital life:
1) Beeping alarms that go off whenever one of Bridger's four med pumps has finished its cycle. Luckily at night we are either too tired or so used to it that we sleep right through most of them.
2) Hospital food, need I say any more?
3) I can push more water through a straw than the light sprinkle that is either HOT, HOT! or COLD, COLD! that the hospital qualifies as our shower.
4) The pull out single bed, when used to sleep two, isn't all that bad, but it makes you feel like a mummy. The accomodations do keep us warm at night, which brings me to the next point ...
5) We feel like we are in the north pole. Seriously, right now I am wearing a tee-shirt layered by a thermal long-sleeved shirt and a zip up hooded sweat shirt, jeans and closed toe shoes. Even Blake gets cold.
6) The real joy is that Bridger will get better. That is what makes it endurable.

We all got pretty good sleep last night. I only woke up 3 to 4 times to change Bridger's night times and try to get him to go to the bathroom. Bridger is still feeling well. This evening he told me, "I love this hospital!" I asked him what he loved about it and he said, "All my new nurses and friends". He did seem a little more tired today, but that's OK, I could get used to taking naps again.

We got a video game system in our room today and another family donated a portable DVD player with a nice carrying case for it along with a $30 gift card to Walmart to buy videos. They said watching videos while traveling to and from the hospital really helped their son cope with his pain. It will be so nice to have. We are so grateful for all the gifts. They really do help Bridger and make us feel loved, as do all the comments on our blog. It's hard for the service bug not to catch hold. I am already thinking of things we can do to help when some else is in our shoes.

Officially yesterday was Day -10. Today is -9. When we make it to day 0 we will begin our count of 100 days that we are required to stay in a 30 mile radius of the hospital.

Day -9
Bridger has had chemo every six hours around the clock. They have continued a couple of antibiotics and lots of IV fluid. For the most part it was a good day. It is a lot different being in the hospital when Bridger is feeling well enough to play around. He was a little disappointed we had to stay in our room and couldn't play the wii in the exercise room. They had to draw labs every 30 minuets and his line was only working while he lay down. Other than that he has a smile on his face.

After months of anxiety, lots of praying, waiting, and about 50 cans of various Lysol products, we have finally been admitted to the Bone Marrow Transplant (BMT) Unit. We got clearance last Friday to be admitted. Bridger no longer has the Rhino Virus! I didn't dare blog before we were actually for fear of jinxing us. Bridger has been doing great. You would have thought we just arrived at Disney Land. I'm almost positive it was all nervous excitement, but he was bouncing off the walls, talking a mile a minute and telling everyone everything. After he ran out of things to say he started asking questions. He was climbing in and out of cupboards, on and off his bed, and running all around the room. And he is full of so much sweet love he has already told two nurses he Loves them. We have also explorer the floor and Bridger's favorite places are the video game room and the toy/play room.

The staff haven't wasted any time in getting things in motion. He is already hooked up to his IV, which will be a permanent attachment until we leave the BMT unit. His first medication was Keppra, which is an anti-seizure medication and he gets his first dose of chemotherapy tomorrow. They say Bridger may lose his hair as early as two days. They printed out a schedule for a typical day so that we would know what to expect ... wow. Its really non stop around the clock administering medications and checking vitals. I'm afraid there isn't going to be much privacy. I hope none of us does anything crazy in our sleep because I'm afraid we'll be on show.


The nurses are all very nice and we have already had some visitors. A family brought by a tote bag with things for Bridger. Their daughter had a bone marrow transplant, so they have a good idea what we are going through and what things may come in handy. The tote had a few toys, but also had an extra toothbrush, plastic silverware and a large, soft, fluffy bath towel. I'm sure the toys will be the least used of all the items. Thank heaven for good people that are in a position to show true empathy. One day we will be able to do the same.

Its really hard to imagine that we are finally here. Pray for us.



Saturday early evening we went to the Houston Temple. I thought it was gorgeous. It was so peaceful and comforting. We walked around and enjoyed the grounds for a couple of hours. It was by far the funnest and most comforting thing we could have done as a family at this time.


For this photo, Bridger composed the shot and set the timer all by himself. He was so proud.





This is one of Bridger's friends who came to wish us good luck one last time. They just happened to be wearing the same thing! She is so sweet and kind. Bridger will use the hat he was given often I am sure.

Well things change day to day around here. We just found out a couple of things.

1. Bridger is very allergic to the clear hospital tape. He had a bad reaction and a rash anywhere the Central line bandage and the steri strips were placed. It also involved the cleaning solution they used to clean his chest and lower back. They fixed the problem around his central line by giving him fake skin. It sticks to him with a different kind of glue made for sensitive skin. All the tape will stick to the fake skin instead of his real skin. So we know what the rash is from and now that they have changed all the bandages he is not scratching himself to death.

2. Bridger has tested positive twice in the last week for the Rhino Virus. It is a very common virus. They asked me if we had been around anyone who was sick? I said we have been in the hospital for four days! Bridger still has a dry cough and a little stuffy nose. Our Dr. thought it best if we put everything on hold until his symptoms are gone. The doctors has told us they will move forward as soon as his visible symptoms are one, even if his bloodwork comes back positive for the virus.

So we made it home today around 11:30 this morning. Bridger is very happy to be playing in his house. We are glad the doctors are being so cautious with him and need your prayers that he will get well soon. We are going back on Friday and hope to be admitted on Sunday. Our admittance has to be on a Sunday or Tuesday because of special testing that has to be done that can only be done on Mondays or Wednesdays.

We have been having some fun this weekend. Yesterday, Blake got in to town and his Mom and Dad left. We decide to go out to eat at the Downtown Aquarium. The food was good, but the main reason for going was to ride the Ferris wheel. Bridger absolutely loved it. He was so excited we had to endure the heat of the day, wait in a long line and postpone dinner and it was worth it. I got lots of cute pics of his ride. He put his hands in the air and said "wohoo". When we got off you would have thought we just road the biggest roller coaster in the world. Bridger was hoopen' and hollering "woohoo ... Yah, that was great, woohoo..." It was so cute the entire line that was waiting to go on the ride next were smiling and giggling.

Today we watched a conference talk in our hotel room, played "little people" with his toys and had a water fight with the syringes we used to flush Bridger's central line. I guess adaptation We ran all around the hotel hiding and squirting each other. It has been a nice relaxing two days. Bridger's temperature hasn't gone above 99.4 so that is a relief.

Yesterday we lounged around all morning. It was a nice break. In the afternoon we drove out to look at an RV trailer that was donated by a family who lost their little girl due to Leukemia. They have started a nonprofit foundation called Big Love. They donated the RV they used to any families that need a place to stay while they are dealing with a child undergoing hospital treatments. It is very nice RV park. The RV center is very well kept and is enclosed with a fence and codded gate. There is a swimming pool that we can only dream of using and a nice recreational building with games and a laundry room. It's also in close proximity to a state park that has lots of playgrounds and places to run and bike. I love the area and it will provide a lot of privacy. Who could ask for more than that. After seeing the RV, we grabbed some stuff from target :) and had to get back to the hotel in time for the home health care team to come teach me how to flush Bridger's Lines. By early evening, Bridger had developed a low grade fever, so I called the BMT Unit. While we waited to get a call back, we decide to go and get a good meal at Olive Garden ... my favorite! On the way to the restaurant we picked up some Benadryl because Bridger will not quit scratching at is bandages. We got to the restaurant and Bridger had had an accident. Before we left, I had tried to get him to use the bathroom. He wouldn't go, so I asked him why and he said, "because you didn't say please". Believe me I have learned my lesson on the importance of asking please. We no sooner had gotten Bridger cleaned up and some soup in him when the BMT unit decided we needed to Bring him to the ER. He had a 100.8 fever that broke on its own, so I thought they would just call in an antibiotic or X-ray and send us on our way. A few labs, cultures and an IV antibiotic later and we finally got released. We got back to the hotel and fell right to sleep.

Today was a long day. Bridger woke up around 4:00 am and he had wet clear through all the bedding and soaked his bandages. They pumped so much fluid into him yesterday that we really had no chance, even though we were constantly taking him to the bathroom. His eyes were even a bit swollen and puffy. He was also running a fever of 100.1 F, so I decide to call the night nurse and we ended up going in to the ER. They changed his bandages and sent us home. We came back to the hotel, ate a meal and Bridger and Grandma played little people and helicopters while I made insurance phone calls and set up some more appointments. Then after such a long night, we all took a nap. Later we went back to the BMT unit to have Bridger's labs drawn and have a few more tests run. Bridger has been very, very sore today. He hurts a lot in his lower back area where they took out his bone marrow and close to his collar bone where they inserted his central line. The pain has caused him to hunch his head forward, tuck his hips in, and shuffle his feet. We named his new walk the "Bridger shuffle". I had given him two doses of pain medicine by the time we got to the BMT unit and we noticed a Rash had started to spread all over his body. It has raised, pin point, red dots all over. The doctors can't isolate the cause. It could be the medicine, the stuff they used in surgery to clean his body, or a viral rash. He took benedryl and we are giving him plain Tylenol as he needs it. I think his funny for the day was when he tried to pick up a toy spaceship and he said, "It's to heavy for my poor arm". I hope he feels better in the morning.

We got to sleep in a little bit this morning which was good for Bridger because he was NPO(no food or water) until after his surgery. Even with the sleep he was a little cranky, I think he was nervous about the day. We said a prayer together and we both felt better and he calmed down. It is amazing what the spirit can do for us. He got to play Video games and watch cartoons while we cheeked in and did paper work talked to the surgeon, the anesthesiologist, and the Dr. from the BMT team who did the bone marrow harvesting, and last but not least the insurance to make sure all of the above were covered and in network. Everything went great Bridger had a little trouble keeping his oxygen level up, mostly due to pain. They where concerned that maybe the central line had punctured his lung. But we didn't find this out until after the x-ray had been read. After he finished telling the nurses all about his dog Chester and his shock collar we have to control his barking he settled in for a short nap. When he looked good they sent us out the door it was about 5:30. Bridger has been doing great the rest of the night. We played with his little people and he has walked and bent down and is moving great. He hasn't complained or acted like he is having pain at all. He keeps looking at his Central line because it come out in the center of his chest his first expression of it was "this is cool" in a questioning tone of voice. I told him it was kind of like Ironman, we'll call you Bridgerman. He is so tough I can't believe it.
Hospital "jamies"


They start up by the colorbone to and end in the middle of the chest he has two ports, one for the meds and one to draw blood. Horay no more pokes!

This is were they drew the bone marrow from. The Dr. said he will only have two punctrer sites on the sikin but if you could see the hip bones you would see many.

Today I got up at 3:30 AM to shower finish packing(the last minute stuff) and get Bridger in the car, prayers, and goodbye's done and driving by 4:00 AM. OK, if you know me we rely didn't get out until 4:20. I am so glad my Mother in law Doyleen came With us. She was Great help company and I don't think Bridger would have had it any other way. We made great time and to our first appointment the Cat Scan witch Bridger was so brave. When they gave him his poke he didn't cry and he held out his arm and said "if you use this arm it will make the blood go threw the tubes faster". The nurse said you have to be older than five your so brave. He said "I am the Bravest boy in the whole world". He loved the actual Cat Scan when it was done and he got off the table he said "I love Cat scans". Then we sat in the BMT Unit for five hours. Every thing is a go for tomorrow at this point. when we got to our hotel room we had some fun goofing around to unwind.




this is the first time Bridger has even seen a swimming pool this summer so we had to let our toes in.


This adorable magic wand and cape was a present the night before we left and he loves it! He likes to make things disappear.

We had our last Violin lesson. Bridger loves his teacher she is great, we will miss getting to see her every Monday.


Bridger helped Grandma Gus paint her nails and then he painted my toenails all by him self. Last night we had a girls night out at my friends house. It was a nice break in my carzy day, and a fun farewel.

Last Tuesday and Wednesday we spent in and out of the hospital mostly in the waiting rooms. Bridger had to get three pokes (his blood drawn) and was not very happy. He cried to go home, we lived on pop tarts and breakfast bars. We found out that we acutely have to be in Houston for good tomorrow. They are concerned that he may have some new inflammation in his lung. So at 9AM tomorrow Bridger will get a cat scan of his lungs. If something looks like a possible new infection we will be put on medicine, possibly come back home and get better. If it looks OK on Wednesday morning He will be put to sleep and have his central (pick line) put in and they will harvest his bone marrow one right after the other. They will only have to put him to sleep once this way. He is very very sad to leave home. He hates to even go the the grocery store witch is .5 miles away. He would rather go with out his favorite foods and drinks so he doesn't have to leave the house. He has it worse than my brother Mitchell used to. Yesterday we all got Priesthood blessings. I was a very special time. Last Wednesday a peaceful feeling came upon me as I was pondering on the drive home. I Know it will be hard but everything will be OK. Bridger's Grandma and Grandpa Gustafson came to be with him for a few days before the transplant and Bridger couldn't be happier. On Saturday we threw him a surprise party. We wanted to get a couple of thing to help the time pass so we decide to have a party Bridge wanted it to be a surprise. so when he saw the chocolate cake that was made in the crock pot he said can I have a peace of cake. I said that is not a cake that is a pile of dirt. It looked more like a mound of dirt than a cake. Bridger went to touch it and I said don't touch it you'll have to wash your hands and we don't want it to get in your lungs. But I do need you and dad to go get some worms for the dirt. He got all excited and said, because Worms help the dirt to be better. So Bridger and Blake went out in the heat looking for worms and when they came back Grandma, Grandpa and me surprised him it was fun. We played party games and had cake. Bridger was very happy. I guess I better start packing.




My wonderful Visiting Teacher gave Bridger this cut cupcake.

More good news. We have a real date. August 18 we will be admitted to he Children's hospital and on the 28th Bridger will receive the transplant. It is a reality that we have been waiting for. A reality that will be trying in many ways but necessary for his future. We have to go this Tuesday to Houston to meet with one of our Dr.'s that we haven't met yet and any last tests they feel necessary will be preformed. We could be there one to three days. Then we will pack for our long stay. I am shore it will all come fast. Thank you all for your prayers.