2010

I bet when GLAD Press’n Seal was thinking of thousands of ways you could use it. I am sure they never thought of this.

We used it for a water proof shower guard for a Central line. It works great. When we pulled it off of Bridger’s skin after his bath his comment was “It's so gentle” maybe we can help them corner a new market?

Bridger was very tiered today. I think going back and froth to the hospital is acutely more exhausting than living there. You’re in and out of the waiting room. Just when a cartoon he likes comes on or we are in the middle of a game or book they come and get us. Then we get our labs drawn and head back to the waiting room to be torn away again when the result come back. Then we think it will be a short visit but ends up being much longer. The fact that we have lived primarily stationary for the last year isn’t helping. To be out and about so much will take some getting used to. Today at our appointment he had an IVIG infusion which is a med he gets once a month to boost his immune system. It is kind of confusing; he gets some meds to suppress a part of his immune system and others to boost it. I am sure glad they know what they are doing. He slept the two hours it took to infuse it. I was glad he needed some extra rest. Bridger was still groggy when we left so I carried him all the way back to the car. I am happy to report he has gained his entire weight back and is even heavier. The rest of the day we did school work, rode his bike and played some video games. It was all in all a good day.

Yesterday Bridger really didn’t want to be at the hospital again. Today I couldn’t get him to leave the waiting room! It was all because of a cartoon. We also were informed that Grandma can no longer come to our Dr. visits because of flue season. They are only allowing one person per patient at a time. It will help a great deal to cut out extra germs. Usually the waiting room is packed, today it was very empty. Luckily we had a short visit and Grandma didn’t have to wait to long in the car. When we got back to the trailer we took Bridger’s new bike he got from his donor to the shop here in the RV center. It is used for maintenance, tool storage and stuff. I didn’t have the tools we needed to put the bike together and figured if it was anything like my dad’s shop they would have plenty to share. There was a nice man inside and he said to just pull up and we could put it together in the shop. He ended up putting the entire bike together, with a hand form Bridger of course. It was very kind of him. The entire time I just kept thinking how blessed we have been. We couldn’t be happier with our living arrangements. Although last night a Two inch long cockroach ran across our floor. As my brave mother in law tried to squish it, it ran a cross the top of her foot, she squealed then recovered quickly and was victorious in her effort.

After they completed the bike Bridger was outfitted in his helmet, elbow and knee pads and a gallon of sunscreen was applied. I could tell it was all worth it for him because he sped off with a grin under his mask that made his eyes squint. I jogged beside him up and down the roads between the RV’s as he yelled "Wahoo, yah, Wahoo……". He was extremely happy. When he stopped at one of the stop signs a butterfly similar to a monarch landed on his handlebars and stayed for what seamed a whole minute. It made any discouraging thoughts of the day disappear. After riding for 45 minutes I convinced him to take a break. It made our whole day! Posted below is some pics of our house on wheels!


The master suite
Bridgers bed

We survived our first check up. It surprisingly only took four hours. First they took his temperature, blood pressure, weighed him, and measured him (Vital signs). Then we waited, they drew his blood and we waited some more. Then we saw the Dr. who went over his lab results. He needed more GCSF to boost his ANC level which was at 750. They say his ANC level will fluctuate up and down but should start to maintain on its own around two months after transplant. We had to wait for the pharmacy to send up the GCSF. It had to be infuse threw his central line. He also takes a med to prevent Graft vs. host diseases. He has too high of level so we will be changing his dose tomorrow. He is happy because he didn’t have to take that med to night and won’t have to take it in the morning either. But we will have to go in again tomorrow to recheck the level. Over all it was a good day Bridger’s favorite part of the day was playing checkers multiple times with his grandma.

I have tried and tried to post this video, but the Internet connection was too slow in the hospital. So here is Bridger the "Rock star" shooting hoops. FYI, toward the end of the last blog there is a section on what happens next for Bridger. We had a great day today. Hope you all had a great weekend.

On day 23 we were discharged form the hospital! Bridger woke up early and I told him today we get to leave the hospital he was so excited. For two hours he kept asking, “are we going now?” In all the excitement he must have worn himself out because he slept for about three hours. I finished packing. I had most of it packed the day before. When the Dr.’s came in and saw some boxes and bags packed they said “you’re already packed”. I told them I had packed most our stuff and that we were really hopeful that we would be leaving tomorrow. I finely got Bridger to wake up and get ready to go. I don’t think he believed me until he saw our Mt. Everest sized pile of bags all loaded up on a cart and ready to go. Once we got our discharge information and medicines from our nurse and signed all the paper work, we were free to go.

Before we could leave the hospital Blake and his Mom had to unload their stuff at the trailer. When they got there they decided the trailer needed some extra cleaning. Two hours later they came to get us. It felt like a parade getting down stairs to the loading area. One person pushed our Mt. Everest cart while I carried my purse, a bag of dirty laundry, a backpack and held Bridger’s hand. Behind us another person pulled to suitcases. As we walked in a line, all the nurses and Dr.’s waved goodbye. Bridger waved and yelled goodbye through his “jet” mask. The only thing missing was candy being thrown. We eventually made it down stairs and were standing on the curb when all the sudden Bridger started waving and yelling, “there’s dad … I see the red car!” He was very enthusiastic. Then he saw Grandma Gus. He was so happy he jumped right into the car with a huge grin. Bridger asked his Grandma “Do you like my balled head? It’s ok if people see it, I’m ok”. We quickly loaded our stuff into the two cars, yes it took two. Once loaded, we had to go pick up a package our donor sent to us. When we picked up the package we were so excited … it was a Cars themed Bicycle. I couldn’t believe it and Bridger thought it was so cool. He can’t wait to set it up. We have to buy a helmet and protective gear first. Finlay after a stop at Target we made it to the trailer. Bridger loves it; he calls it our house on wheels. We spent the rest of the night unpacking, and grocery shopping. It was a long day.

What happens Next for Bridger?
Their have been a lot of questions as to what happens next so here is the low down. We will be living 15 min south of the Hospital. We will be in a trailer (in an RV resort that is the nicest I have seen.) We will live here at least until we reach day 100, some time in December. Bridge will be on the same diet and Isolation restrictions as he was on in the hospital, at least for the time being. So, we still shouldn’t have any visitors. In a pinch we have been told that he can accompany me to the grocery store at the least busy time. Bridger has to wear a big mask with special filters whenever he is by people, outside when there is construction close by, or if someone comes to visit. He also has to wear his mask when we dust and vacuum in the trailer, which is going to be hard because he really loves to vacuum. He has already asked me a few times if he could use the vacuum. I don’t know how much longer I can hold him off. He has to also be carful as far as getting any scratches, cuts, hitting his head and so forth; his blood doesn’t have good clotting factors right now. He is getting more active by the day, so we will have to be extra carful. We will be going back to the hospital BMT clinic three times a week to check all his blood factors and make sure the levels of his medication aren’t too high in his body. Right now he takes 9 pills in the morning and 4 at night. This could change at any time depending on what the doctors find in his blood work. Even though he is producing 100% donor cells right now he is not producing as much as a normal person. In addition, His lymph system isn’t currently active, so he can’t fight viruses. We have to be extra careful right now. While we have crossed an important milestone in his progress, his immune system is still very weak. We have been told that it will take at least a year for his immune system to come back fully. Basically, we are going to be living in the trailer, but doing everything we did in the hospital, with the added advantage of more privacy and a little more freedom. I’m really looking forward to being able to take some walks with Bridger.


This is a chain of love that we have been working on. our carrollton 3rd ward members each signed a strip of paper with words of encouragement. Each day we added links to the chain it circled our room when ever people would ask him about it he would casually say all those people are praying for me.
Bridger was so proud that he built this all by himself. thanks A. family.
Our MT. Everest

Bridger's jet mask

Our house on wheels

Day 24
We are moved in. It took all day to get everything put in its place. In less than 24 hours of living here we got a lesson on RV plumbing and electricity. First the shower backed up. Apparently there is a lever you have to pull to dump the catch basin. This needs to be done once a week or more depending on how much water you are using. Then we got a lesson on not using too much wattage at one time. We had the ceiling fan, the tv, obviously too many lights, and the AC all on at once. This caused the AC unit to stop working. Luckily it was an easy fix. We just had to flip the breaker. Moderation in all things I guess. We are so happy to be out of the hospital for many reasons. The top of the list is FOOD! First thing this morning Bridger insisted on cooking pancakes and sausage with his grandma. It was delicious. Second on the list is being able to go out side in the sun. The RV next to us has a Bulldog. I put Bridger on the trunk of our car so he cold see the dog. He just giggled and giggled as he watched the dog.

I am so happy and excited. Today we found out that Bridger has 100% Donor cells! His (new) marrow is producing new cells that will work properly! Some kids have less than 50% of there donor cells. We count ourselves blessed. We are so happy. Thank you a thousand times for all your prayers and faith. Speaking of prayers here is yet another example of an answered prayer. Bridger woke up very early this morning so he took a long, I mean a really long nap today. (It had me a little worried this being his second day in a row in bed.) He wasn’t very happy when he got woken up to a respiratory therapist trying to give him a breathing treatment. The treatment was a antibiotic that will last for 30 days. This is nice, it is one less med he will have to take every night. The only problem is Bridger didn’t think it was that nice. He hates getting breathing treatments. Every since last year when he had to do this treatment that smelled and probably tasted like a rotten egg. It was nasty. The whole room was left in a dense stinky fog that lingered far too long. Any way he was so upset he was screaming, crying, and thrashing around completely out of control. I couldn’t do anything, the therapist couldn’t do anything, and Bridger was trying very hard not to have to do anything in regards to the treatment. I had tried most of our calming techniques in vain. when all of the sudden the only thing I hadn’t don yet popped in to my head. We should say a prayer. For a moment I hesitated with the therapist being in the room, but I asked Bridger anyway and He said yes. So I told the therapist “we are going to say a prayer now”. He said “ok”, at this point willing to try anything. As I prayed we prayed Bridger would be calm and brave and that he would feel comforted. He calmed right down and when we were finished I was able to talk to him and he listened. I could as I am sure Bridger did, feel the love Heavenly Father has for him and his willingness to help him. It was a much needed immediate answer to our prayers.
After his treatment he had a bath but still didn’t want to walk around or be out of bed. So I carried him reluctantly out in to the hallway in hopes that would make him want to play. Luckily we had our favorite nurse J. and she convinced Bridger to show her how to play boxing on the wii. Bridger go right back in to the swing of things and was awake and happy. Because he has been extra tired, and His hemoglobin is 8.2 at 8 they get a blood transfusion but with it being so close to 8, Bridger’s sleepy behavior and us going home tomorrow. They gave him a blood transfusion to night. To marrow will be a long day as discharges always take longer than planed, I’d better get some sleep.

Bridger was sad and cranky all day. I don’t think he felt very well. The nurse said that if he runs a fever we won’t be discharged. I guess you have to be fever free for 48 hours before you can be discharged. He watched TV most of the day. It didn’t help that he had to be hooked up to the IV pole again today. It was the last day of a study we signed up to do and they had to draw labs a lot. Bridger was extra cold today. Luckily my sister in law C. sent a very warm flees blanket. The only thing that Bridge did besides TV, a long nap, and keeping warm was play connect four. It was a gift and he said I’ve always wanted one of these games. I hope he feels much better today. I wonder how it will go he has been up since 4:30.

Counts are even higher today. We are still scheduled for discharge for 10 am on Friday. Bridger is very congested he coughed so much he threw up this Moring. His eyes are red and very itchy. They don’t seem to be concerned they just say keep watching him. We played football with a ball we got from Grandma and Grandpa Mc. It has all 65 Great grandkids names written on it to show their love and support. It is very neat. We ate some treats and played with helicopters from the G family(your great, thanks so much). Lauren from child life came by and played with Bridger she is awesome. Later after his nap Bridger woke up and started to cry. He wanted Lauren he said in a very sad distraught voice with tears filling his eyes “Where is she. She is my best friend” Bridger decided to draw her a picture. It was of two stick people one was Lauren and he was the other. Underneath the people he had me write best friends. She said it made her day, we hope so. Tonight we danced to the music from Radio Lollypop. You should have seen Bridger’s moves he was rockin! He once told me he wanted to be in a Rock Band. I think he may just have some natural abilities after to night’s performance. I’ll have to catch it on film next time.

The Big news is that the GCSF medicine they gave Bridger yesterday to help his counts go up worked. It worked like magic! Today his ANC is at .65 which is 650! If everything stays on track we will be discharged on Thursday or Friday of this week! I was so shocked I didn’t even know what to think. We are so excited and hope that every thing continues in our favor. All of his meds have been changed from IV to Oral. They stopped his lasix and have lowered his IV fluid intake. He was able to unhook form the IV pole for majority of the day. He was just about to fall asleep when they unhooked him. Then he realized he was unhooked he said “I’m too excited to sleep now mom”. He ran in a U shape around his bed back and forth. He also jumped up and down, turned circles and giggled. It was so cute. I didn’t realize how much being hooked up to the IV pole had affected him. He was back to his complete self, flying make believe space ships with his hands all around the room. It was a wonderful day. We couldn’t have made it this far with out all your prayers and support. His immune system will still be suppressed for quite a wile. They say that most kids are hospitalized at least one time after initial discharged mostly due to infection. We feel like we just scored a touchdown right before halftime, or we just made a 5th inning home run, or it’s finally hump day(Wednesday), or how some parents feel when they just got out of 3 hours of church with four kids all under the age of 5 knowing they will do it all again next week.

Numbers of the day:
WBC - .22
Mono% - 53.2
ANC – 0.06

The ANC is lower but the Dr’s say that anywhere between .06 to .08 is all the same. The #’s are in the low range, so they gave him a medicine today that is supposed to increase the WBC and the ANC #’s. They are still very positive about his progress. And expect his #’s to come up by the end of this week.

We had a good weekend and miss Blake already (he left two hours ago). And I found to things I love about the hospital besides the fact they are helping Bridger get well.
1) Fresh towels and washcloths every day that I don’t have to laundry.
2) The little ice cubes like the ice you get at sonic.

Numbers of the day:
WBC – 0.16
Mono% - 28.1
ANC - 0.07

Bridger’s day:
Played video games
Read an article from the Friend
Ate cheerios
Got home sick
Watched a cartoon
Grew Dinosaurs in hot water in the sink
Took a warm bath
Played with syringes and medical tubing in the bathtub
Flew a bunch of paper airplanes (his cousins made) in our room then down the hall
Found a toy saw in the playroom
Played with the saw, little people, the Lego castle, a dinosaur set and a stuffed animal cat all at once.
Shot some hoops
Tried to eat Lunch
Read what I call fan mail.
Made a sling shot and present for a friends birthday
Fell asleep in three seconds for a mid day nap.

It was a good day. Bridger was a little emotional, but happy to be playing with some new things. The day went by fast. We are so happy his #’s are still going up up up! We don’t see other patients or their parents very often but when we do it makes us very grateful that we are doing so well, our prayers are with them. In fact, Bridger prays for all the kids in all the hospitals on earth. Thank you for all the continued support and love. It makes every day that much easier.

He shoots...
He scores!
I did not match our outfits on purpose, but I had to have a pic of it.

Todays #’s are;
WBC - 0.08
Mono% - 33.3
ANC - 0.05
Another great day thanks to all those prayers! The day started at 5am for us, Bridger was just awake and not about to go back to sleep. He had an early nap and has been playing the rest of the day. We worked on using his leg muscles by having him bend down to pick toys up over and over again. It is crazy how much strength he has lost even though he stands and moves around our room throughout the day. I guess our room isn’t that big. He also got to stay up until 10 pm playing vedio games because he had to swallow a med. And it had to go in at 10 on the dot. He hates to drink medicine he would rather swallow a pill but this medicine can’t be given as a pill. I guess if swallowing meds at 10 pm is all we have to worry about in a day, I will gladly take it.

I happen to be one of those people with the awsome ability of for getting names. You know when you see some one and you can’t remember their name but you still carry on a conversation with them as if you did. Well not only did I not know a pesons name I thought she was a completely different person. It happened to be Bridger’s Immunology Dr.(In our defense we have only met with her three times and the last time was in May. Today when I saw her she was standing out side our room window and when she came in she had a gown and mask on). I thought she was the social worker for this unit. I asked her for the address of some of the charity foundations so I could send thank you cards to them. She was very polite and said I think you will have to get those from floor 12. I was persistent and said “Do you see them very often? (Thinking maybe she could just hand deliver them) Do you think you will see them soon?” Finally something she said clicked in my fussy head and in utter dismay I knew she was not the social worker but indeed our Dr. However it still took me rambling on about how stupid I felt for not recognizing her, and Bridger showing her all his toys, to give me enough time to rack my so called brain and remember her name just in time to say “Goodbye Dr. Hansen” as she walked out the door.

The up side of a bad day is, the next day is most likely 90% better than the day before. Having ended the bad day with six or more snack size Kit Kats, I made sure I went for a run today which always helps me feel better. It also helped that the day started out with good news. Bridger’s WBC (white blood count) went up to 0.07. It has been at 0.03 for the past three days. They said that when the WBC goes up the ANC fallows. Today the ANC is 0.04. His Mono% has been at 0-5% since transplant and today it is 20.0. I am excited because they also said when this # goes up all of the #’s will go up! We then got even more good news. They stopped one of his meds completely and one is gong to be taken by mouth this means two more less beeps!

Bridger played hard all morning with some airplanes that you shoot with rubber bands (thank you MW and family). He had all of the nurses playing with him in the hall way. We walked up and down our little L shaped hallway flying and chasing the air planes. It was the best exercise for him. We made a Lego castle set and played with plastic syringes in the bath tub. After having a bath Bridger has to put on a special lotion. He hates it because it makes him so cold. So he gets the royal treatment from the blow dryer. I warm his towel and clothes up before he puts them on every time. This may be a hard habit to break. Thank so much for the greetings today it is always fun to get mail.

All of Bridgers blood levels stayed the same today. He ran a slight fever at 100.1 they aren’t too concerned about it though. He seemed to have another good day. We played most of the day yet I was kind of down. Maybe it is due to the lack of sleep from the constant beeping of the med pumps last night? (Some nurses are more prompt to shut them off before the alarms sound than others last night was one of “the others”) After feeling sad and home sick I got a pit in my stomach while having a terrible mom moment, thinking I’m not even the one sick, I shouldn’t be so selfish. This is much harder for him than it is me I shouldn’t be having a poor me day. Maybe after living in a hospital room for 24 days anyone could be entitled to at least one home sick, self pity day? Bridger still kept me smiling though; he is such a happy and funny boy. I don’t remember if I mentioned that every Tuesday the cutest elderly volunteer couple brings the FUN cart by. The Fun cart has lots of different toys to choose from. Today Bridger chose another paddle ball, two small jet planes, and the coolest blue with green triangle sun glasses you ever did see. He looks so cool in them. It was kind of dark and cloudy out side so I suggested we could turn on the bright exam lights that are directly over his bed to test out the glasses. He promptly turned them on, climbed up on his bed and lay out as if he was at the beach with his brand new glasses. It was so darn cute. I just can’t get enough of him. We got a patient greeting today from a friend, it was so fun. If you are feeling the need to send Bridger something this is a great thing. You go to www.texaschildrens.org , on the right side of the screen under Quick Links you click on Send a Patient Greeting. You choose a graphic and type a message and they print it out and deliver it to our room.
Looking so cool!


We have played for hours the last two days with his new erector construction set. He Loves it! (Thank you K & G, T.)

This him playing NURF Wii it is way fun I even like it.

We played hard all day! I was so nice Bridger wanted to play little people again. Before the hospital I was so sick of playing them when we left I wanted to leave them home. Bridger and I would play for two hours at a time. The thing is I am the voices of all the little people why he is a spaceship, a tank, or jet airplanes…Luckily, for the most part he tells me what each person should be saying and doing. However it does make me happy that he wants to play with them again because I know he must be feeling that much better. We were able to play some other games throughout the day that brook it up and made it go by faster. Bridger polished off his 5th bag of popcorn tonight. It is the only thing he will eat and has been eating for the last three days. They say it is ok, as long as he is still eating something it is better than nothing. He is happy and doing well. His ANC was at 0.02 today. Thanks to everyone for all your support.

On Saturday morning His Grace Foundation hosted a Brunch for all the parents and nurses. Bridger was sleeping so Blake and I where able to go together. It was held in the Dr’s conference room. They set up tables with nice table cloths and floral center peaces. The food was on a buffet table that over looked the construction of a new building. As we sat down and ate amongst some nurses we laughed about how it felt like a date it a funny way, it was very nice of the foundation. After our morning date, I ran a couple of errands that always take way longer than expected; Lysol’d myself and came back to the room. It is always wonderful to have Blake with us. He makes me so happy. One of the nurses asked us how long we have been married. It has been seven years and our marriage has been bliss, that doesn’t mean that life has been. Life can be hard that is why I am so grateful we have each other to lean on.

Bridger has done great for the last two days he has an ANC level it was 0.02 and then 0.03 it is going up but could droop or jump up at any point when this level is at 0.50 for three consecutive days it will mean he has engrafted the new marrow. So it is nice to even see a number even if it goes down. His blood pressure for the last four days or so goes too high around noon every day. Usually medicine is used to help him void extra stored fluid which helps bring the blood pressure down. Today it didn’t so they started him on a small dose of blood pressure medicine. It is not expected to be a long term problem. It is still too early for GVH to be showing up so we will continue forward with prayers and faith. To night before Blake left he went in to the restroom and all of the sudden Bridger said in a sad ton “I miss Dad” he loves his dad so much there are always tears when his dad is gone.

I have to give a special thanks to my two nephews and oldest brother who buzzed their hair. As we looked at their pic’s I said “look what they did for you Bridger, they look so cool, they like their hair buzzed”. Bridger then put his hand on his head and said in a happy tone “I like my hair too”. We owe you one boys, and we love ya a ton!

For two days Bridger has been planning a surprise party for his dad. After his sad morning last Wednesday I told him “Dad is coming in two days” He got all excited and said “after a night and a day and a night and a day he will be here! Lest have a surprise party for Dad!” Because of his earlier statement about his hair and his dad I decide to encourage any excitement about the reunion. Child life supplied streamers, balloons, and a birthday banner that transformed in to saying HAPPY – DAY. They also gave us some crafts to make dad a home maid gift. When I told Bridger they might be able to get us some balloons he said “That’s just what I needed”. Bridger made a great picture for his Dad as a gift. He drew his dad wearing a party hat, holding and ice-cream cone and three balloons. Bridger did it all by himself and did a great job. When Dad came in all the lights were off and Bridger pretended to be asleep. Then I flicked on the lights and we jumped up and yelled surprise! Blake was surprised and very touched by his present.

Bridger had a good day today. He slept in while I washed his bedspread and blankets. Because he is so cold all day he is wrapped up in them so I had to wash early. He had to get an infusion of platelets, which makes him very tired. But after his long nap we played the wii for a long time, opened a package we got, and had a visit from the child life specialties. She helped Bridger make slime he didn’t really want to touch the slime it was funny. She brought us some crafts to work on and played the wii with Bridger. He enjoyed her company. It was a good day mostly because Bridger was in good sprits. The Dr’s are still very pleased with Bridger’s progress. Thanks for all the support it gets us from one day to the next a whole lot easier.
One more thing Bridger won another prize from Radio lollypop! Either they don't have very many participating or Bridger has good luck, something I haven't had as far as prizes are involved. I don't think I have ever even won something as simple as a cake walk. But who needs cake it just means you have to walk more once you have eaten it. :)

It was a very sad day. It started early this morning around 2:00 am when Bridger was crying because his hair had fallen out all over his pillow and had gotten all over face. His nose was so itchy he was miserable of and on all night. So around 9:00 am I got the volunteer that cuts hair to come to our room to give Bridger a buzz cut. We have been talking about it and preparing for it but I did not expect such a reaction. When he was done he touched his head and said I want to see it. I gave him a hand held mirror to look in. He said quietly “I didn’t want my hair cut” then he threw the mirror. At this point I was thinking not seven more years of bad luck!!!!! I used my Jedi reflexes and grabbed the mirror. Then I grabbed my boy and hugged. Huge alligator tears ran down his face and he said loudly “I don’t want any one to ever see me again not even Dad”. I took all I had to not let my self break down and cry with him. I rocked him hugged him talked to him and prayed with him. He hung on to me tight like I could make it better. He fell asleep during our prayer and then I couldn’t keep the tears back any longer. I felt so bad; I thought maybe I should have waited, or .. or …or... A ton of maybes ran threw my mind. But then I got a hold of myself and realized this was inevitable and it doesn’t mater when it happened it already has and now we have to adjust and move on. After crying to Blake (who also felt terrible after hearing the reaction) and making one of my sisters listen to me blubber about it, I felt a little better. The best way to describe how his hair looks is comparing it to some ones skin that has lost its pigmentation, except its hair vs. no hair splotches, and one front side is almost completely bald. After his nap he was in much better spirits about it and we played the wii. He got sad one more time over it but when my mom called he said “hello Grandma Dar, I got a blond cut today. I mean a buzz cut”. So by the end of the day he was accepting it. He is still pulling out the little hairs and if he scratches his head it leaves a baled line. I forgot to mention how sweet this little boy of mine is, yesterday he called to ask the nurse for a Popsicle and said “two Popsicles please I want to share one with my mom”. He is so thought full, and after thinking about his reaction to his hair I remembered two things:

1.When we told him he was going to go bald he said in an upset tone “well then I’m not going to go to church”.

2.When he was 3 I herd him hollering from the bathroom “Mom, Mom!” when I found him on his steep stool looking in the mirror I said what? He said “I can’t find my eyebrows” his hair was lighter then but I guess he as always been worried about his appearance.

Today did end on a good note. Bridger picked up one of his toys for the first time today and played. Then before bed I was holding him and singing Called to Serve while dancing my fingers around. This made Bridger Belly laugh. He tried to hold down my fingers but one would always escape. It was fun we both laughed. It is those small moments that warm my hart and I cherish most deeply.

The Dr’s cancelled his last two doses of MTX which is a chemo that suppresses the immune system. It caused his liver enzymes to go to high, and they don’t want to give it any more for fear it might damage the liver permanently. So he will be going on steroids for 8 days. They will have the same affect and with the bonus of not causing Mucositis, which hasn’t really bothered him today, he ate great! They also say the earliest he could be engrafted and ready to move out of the hospital would be the 26th, which is sooner than I originally thought. This is all good new.

I also just thought it would be fun to list some things that happened on this day of 09-09-09

1.Bridger got his first Buzz cut
2.It rained all day in Houston
3.We paid off our 2nd car!
4.It’s day 7 after Bridger’s BMT
5.I was contacted by a dear friend from almost 7 years a go.
6.We ate Ham sandwiches for the fourth day in a row.
7.Bridger and I cried a lot and laughed a lot all in one day.

I the gift basket from His Grace Foundation there was a lint roller. At first I jus thought “this is thoughtful” but now I know what it is for, Bridger’s hair! It is falling out in large amounts. Any time he leans on anything a ton of little hairs are left behind. His hair is visibly thinner but there is still a lot to come out. I stepped in to the bathroom and when I came out Bridge had made a pile of hair on his bedspread and said “look what happens. What a mess” he is handling it ok. Late last night Bridger pealed away his central line bandage and scratched his skin until he bleed. It is now at risk for infection. The Dr’s said they will have the bandage changed everyday, and they are using a special ointment on the scratches. Today after our nap Bridger woke up with a really bad tummy ache. He was so sad and angry he said “you shouldn’t have let me have nap and this wouldn’t have happened” I caught me way off guard. They gave him some medicine and that made him drowsy for the rest of the day. But not drowsy enough because his blood pressure was way too hi but after a couple of hours it came down with out meds. I noticed he drank a lot to day and was holding his jaw funny. I asked him if his throat hurt but he just said no. Later he said it felt like something was stuck in his throat. So I fear we have the start of Mucositis. The Dr said it was good he still had some taste buds left he probably wont get the mouth sores until he looses all his taste buds. Bridger has found a second favorite drink next to milk. He is taking after my oldest sister and loves Country Time Lemonade. He wasn’t very active today maybe tomorrow will be better.

The hair is starting to come out. This morning their was a few hairs left behind on Bridger’s pillow, and when we run our fingers through it a few strands come out. I told him your hair is starting to fall out. Then to make it a good thing I said “you know what that means? You won’t have to wash your hair anymore and no hair cuts for a long time” both things he hates. He was very excited about these options but then kind of got a sad look and said “but I like my hair”. I said “it will grow back fast and it will look even better. Besides you will have your beautiful blue eyes that shine”. One time he was falling asleep and I didn’t want him to, so I said “Don’t you close those beautiful eyes!” Now every time he is going to sleep he says “Mom say don’t you close your beautiful eyes to me”. It is a silly little thing we do but always leaves us smiling before bed.

Bridge received platelets today and was a little more laid back. The Dr’s say that he will most likely get Mucositis, witch is soreness or ulcerations in the mouth and throat. This leads to not eating, less energy, and the need for nutrition supplementing. Luckily we don’t have them yet but they say it usually happens soon after the hair loss. We are just waiting for the engraftment which can take weeks. We will hopefully avoid any infections and viruses in this time. By next week we could see sings of Graft Versus Host Disease (GVHD) they say a little can be a good thing so we know that the cells are starting to graft. But severe cases require aggressive treatment. We are hoping for the best and have no reason not to.

Last night Bridger woke up with leg pain. I think he is just not used to standing so much. If that is the reason I am sure they will hurt a lot tonight because he played the wii off and on all day. I think he stood for two hours in a row at one point. But I figured it was better for him to be up and moving around than just sitting watching cartoons. His stomach may hurt as well from all the laughing. In between the wii we read together as a family and talked. It was nice.

Bridger has a disappearing rash. It comes and goes. It mostly goes whenever the Dr’s come to see it. They are going to send a dermatologist to come and look at a spot on his back. For the most part (only a few throwing up episodes have occured) things are well here, we think about all of you often.

Bridger’s day was packed with fun, because his Dad is here! Bridge loves his Dad to play video games with him. When I try its, “Here Mom let me help you.” Blake brought the wii, which I am a little better at. Bridger still wins, but I at least enjoy the games. The boys played while I went jogging, got a massage (complimentary of His Grace Foundation), and did laundry for three hours(I only had 2 loads?). The laundry room is a little crazy. I put my load in and got a couple of extra clothing items when I took it out. Often when I go to switch my load some one has done it for me. It is not very private. That is why choose to stay with it and wait. When I finally got back to the room Blake said Bridger had been belly laughing and was very excited about the wii. His favorite game is sword play on wii resort. We are all happy and well. Things are continuing to move in the right direction for Bridger. Thank you for your continued prayers. I know his cousins don’t miss a prayer with out praying for him as I am told many others do the same, thank you. Your faith strengthens us.

A lot of people are asking for our address here at the hospital and what they can or can’t send. So here is a list of both below.

Don’t send:
Flowers
Baked goods
Fresh fruit or vegetables
No dried fruit or nuts with shells

Things you can send:
A card
A letter with pictures to hang up
Individually packaged and processed foods or treats like fun size pretzels, chips, cookies, candy bars, basically any junk food in the individual size packs.
Just a note: Bridger prefers painting over coloring


Send to:

Texas Children's Hospital
Bone Marrow Transplant unit
Bridger Gustafson Room 845
6621 Fannin Street
Houston, Texas 77030

Today we got a letter from our Donor. It touched our hearts and made us all cry. She expressed her feelings of excitement of getting to be Bridger’s donor. She lost a loved one because there was no donor match and has been on the registry every sense. She sounds so amazing. Almost every night I tell Bridger “I am so lucky Heavenly Father sent you to me.” I also feel this way about our donor. Because of her I get to keep telling him how lucky I am. We are both looking forward to meeting each other in one year.

Bridger has had another fantastic day! Why I was talking to Blake on the phone all the sudden Bridger started to yell very loudly! “GO GO GATORS, FIGHT FIGHT FIGHT, FRONT STEP BACK STEP, BITE BITE BITE!” Blake and I were laughing so hard I couldn’t even ask him were he learned the cheer. It was from a cartoon, “surprise”. He continued cheering over and over getting louder each time. I thought the nurse might come in to see if he was ok. Luckily she happened to be at lunch. Bridger got his first blood transfusion today of Red blood cells because his hemoglobin was low. Which type of blood type you may be asking, his original blood type or his donor’s? His for now, the Dr. said his type won’t change to the donors type until later. The Dr. also said that he is doing extremely well and he knocked on wood for us. He said that the longer Bridger stays well the shorter his down time will be. They say when his #’s reach bottom he will be sick. But hopefully because he is doing so great he will only be sick for a short time. Faith works miracles don’t you think.

Some have asked what I do all day. Basically, I sit with Bridger. He likes me to be right beside him at all times (I am glad that I have him to be beside). He even wants me by his side when he is watching cartoons. He watches me to make sure that I am watching and says “Don’t even take your eyes off of the TV for one second”. I try to read but then my eyes are not on the TV. If I am talking on the phone it is too loud for him to hear the TV. If it’s not cartoons, I am trying to get him to eat, or am eating myself. Today he ate a ham and cheese sandwich and pudding for lunch and it took him just under two hours. That may be a record. He is a very slow eater. I also take naps with him, read a lot of his books, and I spend a lot of time trying to convince him of playing any number of games with me. Don’t forget the bathroom breaks with the gloves, and all the bathing. Then there are all the visits from the Nurses in and out 50 times a day, for various reasons. Some examples are; to hook up the medicine, flush the medicine, change the IV tubing because his blood backed up into the line, whenever he needs blood products, to draw labs, to help when he throws up, they even bring him hot chocolate if he wants it. Then there are the visits from the Patient Care Techs aka, PCA or nurse assistants. They come in and take his vital signs every two, or three hours. So at night once Bridger is asleep, my phone calls are made, the blog is updated and I’ve read my scriptures, I usually go right to sleep because although I have done nothing physically, mentally I am exhausted.

I feel like we are finally moving forward for the first time in a wile. We will still be just waiting from now until engraftment happens, but waiting in a forward kind of way. It’s hard for me to explain. Bridger sat straight up out of bed at 7:00 am and said “Mom, it’s going to be a good day today” and it has. Bridger had two more baths to day; he is going for cleanest kid in the unit. He ate 3 small pancakes and some applesauce! Then he played his Headsprout reading game on the computer (which I recommend to anyone who has a kids, especially boys who are ready to begin reading). He played for an hour. We sang some songs and played one of his new games. We had a nap, which was very relaxing. Of course we watched some cartoons. At about 5pm Bridger got nauseous from one of his antibiotics and threw up off and on for three hours.

Right after Bridger got done heaving, two of the Radio Lollipop crew dropped in to give Bridger a tornado craft to decorate. Radio Lollipop is a live radio station on the 16th floor. They broadcast the music on channel 18 of the TV every Tus.,Wed, and Thurs. Most patients can go up and be in the studio and teen rooms. Others stay in their rooms to make a craft that is brought around by some lollipop volunteers. They give out prizes for the best craft. Kids call in and request songs and tell jokes. Bridger surprised me and said yes he wanted to make a craft. So we lined our hospital tray with the brown paper hand towels so he could use the glitter. At one point I thought I should be turned in as his craft due to the amount of glitter that is still suck to me. While he crafted, we listened to the jokes. Bridger giggled and when a rendition of twinkle little star came on you can guess who was singing right along. Yep it was Bridger! He started to get tired, probably because I was taking pics, so we started to get ready for bed. Then the two Volunteers came back and gave Bridger a prize! I guess they called his name on the radio as a craft making winner, but we didn’t here it. I would say he already has better luck than I ever had. It was a Good day!
Hangin out
His craft
His Prize!

It is 11:30 pm and the transplant is complete! It took all of 45 min. It took longer to pre med Bridger and hook him up to all the monitors. During the transfusion Bridger woke up to go to the bathroom and then went right back sleep. The bone marrow was in a tinny 4x5 bag that looked like watered down cherry Coolaid. I quizzed the nurse during the 45 min. We stood over him asking about this and that and I got the universal answer to each question, “everyone is different, it just depends”. His nurse did say that his blood type would change, which I didn't expect. The whole thing was so quick I can’t believe it. Bridger did great. His stats stayed stable and he hasn’t had any reaction yet. They will monitor him over the next four hours and then he will be freed from all the monitors. Wow, I’m exhausted, more mentally than anything. It has been one great day over all.


Each kid gets a banner on their transplant day!


How uneventful the actual transplant is.

If you look closely it's the little red bag on the right of the pole.

Sorry I didn’t up date earlier it has been a crazy day. It is Day 0, our Transplant day! Only we won’t acutely start the process until tonight at around 10:00 PM. It is going to be a fresh marrow meaning the donor had the marrow drawn this morning. A Carrier flew it here. Their plane landed at 4:45 pm. They will bring the bone marrow to the lab here in the hospital. Then they will draw out as many Red blood cells as possible, because the donor has a different blood type than Bridger. This is not uncommon. The marrow matches and that is what matters. They will just have to give him some medicine to help protect his kidneys.

I got a call form my BMT Donor coordinator. The coordinator for our donor wants to come and meet us. They cleared it through our Dr. and we agreed. We are very excited because we have a letter to give our donor and the coordinator will be able to take it back to her sooner than I can mail it. I also wanted to give her a necklace from the Hallmark stores. I figured my best chance to get something was at the gift shop on the 3rd floor. First, I had to do a load of laundry; I wanted to print some stuff out to give the donor, then I decide to go to the gift shop to see what they had. And it was a small miracle! They had the exact, I mean EXACT necklace I wanted from the Hallmark store. I couldn’t believe it. I still am excited about really having it in time to send back with her coordinator.

I keep running out of time to post this blog. One thing and then another happens so here it is now almost 5 to 10. It is a good thing I have been so busy. That way I haven’t gone crazy waiting. The Coordinator came and we had a long chat. It was really neat. The donor sounds so excited to be doing this and wants to stay in contact. I pretty much did most of the talking, telling her all about Bridger and his past medical history. It was fun I am glad she came. It made the day special.

Bridger has had a much better day than yesterday. He’s had two showers today. (His choice) He ate all his Cream of Wheat for breakfast, Berry Kix, pears and Oreos for the rest of his meals. He had a long afternoon nap. When he woke up he even hummed some tunes. Later he asked for a Ding Dong, followed by a big smile that stretched form ear to ear and gave him a double chin! It made me laugh. I wish I had one to give him, but I don't know how to get on in the hospital. Right now we are waiting for the marrow. The nurse came in and said it will be here in 30 minutes. Thanks for all the fasting and prayers in our behalf. It brings tears to my eyes whenever I here or read about all that is being done for us.


P.S.
Today was the first day I called Blake in tears and it wasn’t over Bridger. My beloved Carrollton 3rd ward was split last Sunday. Most went to the 2nd ward and a small section of us got put in the 1st ward. I Cried a good cry and then thought how Heavenly Father put us directly into that ward. It was not by chance because we tried to get two other house that both fell through. Well, He did such a great job putting us exactly were we needed to be for a year that I don’t have any reason not to trust him this time. And maybe it wont even be for us but someone else that needs what we needed. He always knows what is best for all. So I put my trust in him.

This is supposed to be our rest day before the transplant. But the chemo seems to be catching up to Bridger’s fast pace body. He has been throwing up off and on all day. His white and red blood counts are finally dropping (this is a good thing, but makes him tired). Bridger is very sad today. It breaks my heart because I want to make it better, but he just wants to go home and we can’t. He has slept most of the day. He has retained a lot of water so they gave him some meds to help. The water retention may be causing his cough. The Dr.’s decided to get an X-ray today to make sure everything was still in check. The results were negative, no pneumonia! All kids that get a BMT have to wear a big mask with special filters on it. It looks kind of like a fighter pilot’s mask. Bridger had to ware his to get his x-ray. He fought and cried the entire way down to radiology. I assume we will not be going out much when we leave the hospital and have to wear the mask.