Levels

Ok so yea his levels were back down again which means they will not pursue other medications as long as his levels don't change next week. I mentioned his new increased rash activity returning but they said they will check him over on Monday. It will be decided which direction to go from there. His energy is amazing. I love it. He has leveled out to being happier towards the end of the week. His personality is wonderful. He is doing this squeal of delight that brings my heart great pleasure. He started a new sound this week. The "th" sound. It comes out as just 't'. So we ask if he would like to take a bath. He will repeat, 'BAT' in agreement. Robert has been working quite a bit. It is endearing to hear him ask about Dad throughout the day. I am not looking forward to the kids returning to school. :( Gary enjoys his siblings very much during the day. I am a bit more at ease since my last post. It takes me a couple days to let things settle as far as my emotions. I get all unwrapped up just to get all wrapped back up again on Monday.

*Happy note: I just made contact with a friend I met in High School. I have been looking for her on and off for years. Gotta love Facebook! She is from South Africa and beautiful as ever!

Also in the right hand corner down below I have begun to keep track of Gary's levels.

Direction

We are back home from our weekly Cytoxin and Methotrexate treatments. Gary is doing. He is doing OK. We suddenly have a return of raging rash activity in his skin. It has me a bit worried with increasing levels. The doctors are talking about adding new drugs.
He has not been this raging red since May when we were first diagnosed. No we were not in the sun. This picture was after an hour after his IV was put in BUT this is not his normal. It is really tough seeing different doctors each week. It may be time to but our back up plan into action. DR. P Our main doc was not there this week so I had to deal with all the nonsense. Nonsense of starting a drug that I thought we should be on. There talking a completely different one then our doc talked about. "Maybe Cytoxin isn't his drug." Maybe I should lay on the ground and kick my feet and grit my teeth and scream right in the middle of the hospital. I know that will get me know where. Profanity. His levels were good I guess. The one that was up last week won't be back until later this week. I fought to get the tube out but I lost my debate. It ended with this. "Do you know how to administer the heimlich to a toddler? What if he was choking on a hot dog. " My reply, "I don't give him hot dogs. There high in sodium!". We had to increase his blood pressure medicine because that has been up since last week. Obviously we did not do any tapering this week of his home steroid. His knuckles and hands have begun to break out again in the Gottrons Papules . Would make no sense to taper off again. The activity in his skin especially on his face is evident. I assume they will be calling me this week to discuss. Or not since we go back in on Monday. My positive piece for this entry, we had our own room. No hallucinating patients this time. Nurses were great. I love loved our nurse when we got down to the our room. She was on top of everything this time. It must have been National Intern Med Student day or something. A whole lot of them were peaking through the room. I would have let them in but he was fast asleep. Next time.

In honor of my Father-in-law

Last year at this time we were driving back and forth to Portland. It was awfully errie to be at my sons hospital bedside exactly a year later. I remember when we first walked in to see him. His gentle 'Hi, how are you' I can still hear clearly. Grandpa Richards ashes were spread over the ocean yesterday (8/24/09) on what would be his 59th birthday. I wish we could have been there for that. Healing is not an easy thing for anybody. If you decide to watch the memorial video, don't forget to mute the music on the right >>>>>>.

8/24/50 ~ 8/26/08

Calm

I have finally found a calm place in my mind again. I am preparing my heart and soul for the future. I am not always going to hear what I want. These past couple days have bit a stressful. Gary did not pass his swallow test. The NG tube stays. I was able to buy Gary 2 weeks. In 2 weeks if he does not improve with his swallowing, the situation will be reaccessed. We came home from the hospital at 1am (since we went past midnight it was Wednesday) but really Tuesday night. The intern doctor came to talk to me about going home. The look on her face wasn't good. I thought she was about to tell me they wanted us to stay. For whatever reason, Gary did not tolerate the IVIG this time. Every time we turned it up his blood pressure went up. Not sure if I put that in my last blog. Anyway, I thought for sure she was going to say stay but she didn't. She felt comfortable sending us home with the understanding that I take him to his pediatrician for a blood pressure check. She discussed with me that the swallow study report had not come in yet. She called me at home the next morning. We talked about his blood pressure and how it would be ok to have it taken Friday. Then she went on to talk about the swallow study results. "At this point we are recommending G tube placement," says the doctor who knows not! She told me that it had been discussed with the team and if I would like to schedule the surgery there at the hospital then they would be more than happy to set that up with his over night stay. Going into details as such. Right. For those of you that are not familiar with the different between and NG and G tube, I will tell you. NG is what Gary has now. A tube goes in his nose, down the back of his throat, right into his stomach. A G tube is a piercing or puncture threw the skin into the stomach. It allows patients to eat by mouth more. The NG tube seems to be interfering with his swallowing somewhat. How much, we don't know. Right away I said "ok". Simply ok. I knew. I knew it was all crazy talk. I called the nurse I always talk with right away. Here is my message, "Yes, this is Erika Bradford, Gary Bradfords mother. I need for Ruthie to call me right away. I need for Dr. E to know that interns are calling my house trying to schedule a G tube placement. Please call as soon as possible." It took awhile but they called me back after about an hour and half. The information was what I thought. They said NO WAY. Not true. That is not happening. Thanks for getting me all uppity people! Unfortunately she had other things to discuss with me. She explained that Gary's levels went up again. That was up again from last week. Ruthie told me that Dr. E would be calling me because they needed some time to figure this all out as far as where to go with treatment. Later that evening I got the call from my favorite Dr. E. She explained she was a bit confused on why his levels are climbing back up. She asked me what I thought about placing a G tube. I told her I think he needs more time. Time to improve on his own. The thing I don't like about that is he has seemed to back off of his improvements. He has come so far, recovering great. But it has seem to stall. I have no further improvements I can note. Still not stepping up or down stairs, and has exsisting tenderness in his knee and hips. I am confused on why she is confused about his levels going up for the second time. They have decreased his steroid for the third time now. Results: his levels went up. Hello? It is hard being a mother without the medical knowledge. I know there is an explaination why this isn't completely connected. She said his levels may have gone up because we skipped our Friday infusion for the concert and didn't come in till Monday. But his levels were up last week too and it had only been 7 days. I explained to her that I don't think it necessary to remind everyone that this disease came to the front door. We bolted the door. It can easily be running around us to go thru the back door. So we are going to wait. We go in on Monday again for our regular infusion of cytoxin and methotrexate and most likely steroid pulse. If in two weeks is levels have not turned around the other way and his swallowing has not improved, then there is talk of adding a new medication. We will revisit the who G tube thing again in two weeks has well. (Between you and me, I am going to fight that one all the way).

We have all been already a little sore over the approaching one year anniversary of loosing Grandpa Bradford. :(

Bang Head Against Wall

The sound of the air conditioning fills the room. Alarms and announcements that visiting hours are over break the sound of the electric blow. The vision of home fills my head. My pillow, my bed. It is like watching a faucet drip while someone drives a nail into your back. Slowly the medicine drips. (Ok I will stop the dramatic novel talk). Thank God for my husband who drove up to hospital to give me a break. Gary is not tolerating his IVIG treatment very well. His blood pressure has been going up and down. I can tell he does not feel good. He wants me to lay on his bed for comfort. Then he wants to pound me over my head with his toy. Then he wants me to get out of the bed, oh wait, no back in. All day. Poor baby. Too think he has been laying there all day as well. The swallow study went OK. JUST OK. Grrrrrrrrr. He went from a moderate problem of not being able to clear his food, to a mild problem. The coordination of his swallowing muscles have improved so he is having no nasal regurgitation. We knew that because he was cleared to drink water. It appears there is a little lagging in the esophagus. The fun part about this is the radiologists. Of course you want to know what they think. What I have to remember is they don't know Gary or what his disease is. The radiologist talked about putting a G-tube in. That would mean surgery for direct access to his stomach. She said that she thinks that the NG tube is contributing to the difficulty to clear. So let's take it out right?! Yeah, I wish things were that simple at a hospital. Nothing ever is. I seriously was willing to take the NG tube out right then and there and do the test again. But obviously that is not realistic. I could though. The official report has not come back yet. I talked to the doctor this morning and she asked how it went. I told her. I told her about the talk of the G tube. I shared that they were lucky that I have been blessed with high maternal intelligence so I "psssshhhhhhhhh" it out of my head. Dismissed it has the words rolled off the radiologists tongue. Appreciate the idea but no. No way will I let them put a G tube in. The doctor said she will call me at home about whether or not the NG tube stays or not. I am not sure what they will say at this point.

Our new neighbor is a cute little Hispanic boy whose blood count is off. They think he has leukemia or a virus. Not that I want him to have leukemia but a virus????? Hello, why are we in with a patient who has a suspected virus. Third person: She bangs her head against wall.

I won't moan and complain about the nurses and how things have gone once again this time. Our poor nurse seemed like she didn't want to be there today. I ended up setting up his formula and giving him his medication. And we sat and sat. I know I said I wasn't going to complain but I did, so there. But the new nurse we have is great. I really enjoyed her today. She has been in every 15 minutes taking vitals. Our morning nurse I didn't see very much. I had a feeling she didn 't have the time to do our IVIG therapy so we won't leave tonight till close to midnight. I told them that if we get past midnight I didn't want to have to take Gary out to the parking garage in the cold rain by myself to drive home. My hubby has to leave at 9 because we didn't get very much sleep last night. I didn't get to shower today because we didn't have our own bathroom. I didn't even feel comfortable using the room's bathroom because I had to walk across the other patients space. Wine or Whine I mean. Breaks over.

*LEVELS*
Levels stayed the same this week so we will be back next week. Think I will play dead when they try to set the appointment up.

Rough

We have had a frustrating day at the hospital. But out of all my pants, I got my patience pants on. We were first put in a room with a poor kid we have met before. If you look back in my blog and read about the infusion center, this kid is in it. He was the once that screamed at the top of his lungs "The baby is crying!". As soon as we walked in and saw the poor little guy clutching a pink basin, and heard his voice I knew. I knew I had seen this kid before. His mother is super sweet. But right off Gary and Lucas were not a good match. Lucas has tumors in his spine. For whatever reason it is messing with his brain. He hallucinates. Loudly. Gary was already having a lot of anxiety walking into our room knowing the IV team would follow. Lucas began frantically screaming that Swipper (cartoon character from Dora the Explorer) was coming out of the TV to get him. Over and over and over again. Gary did not understand and just cryed. I could make him understand that Lucas is sick and Swipper isn't really in the room. We sat there for 1/2 hour waiting for our nurse. Lucas however was in much greater need as his hallucination switched from the Swipper to The Grinch. Gary and I went to the play room until they could figure out what to do. We came back for a diaper change to find that Lucas had calmed down. The only problem was that Gary began repeating Lucas everytime he called for his Mom. Again, trying to convince a two year that is not ok is impossible. Hours go by and we waited and waited for the IV team. I did my hot bath trick and wrapping Gary's arms in warm blankets. It didn't work this time :(. It was on the fourth poke they finally got it. We then got word that they would move us. The next problem was that the doctor did not sign off on all of Gary's medications so pharmacy would not be sending them over tonight. I just stare at them. They moved us downstairs to a room with a child is around the same age as Gary. Gotta love hospitals. I know its not the Hilton, but if we are not running meds I could at least be in my own bed. Here is to a better tomorrow! Swallow test is at 9am. Praying that NG tube comes out.

A few pictures from the CureJM Concert

Heading out after the concert.




Gary with his cherished Uncle Bill.



My boys!


Gary is under there somewhere.

On stage with the Smedley's, and the other families.

My babies!

Kristen, Mason, and Damon

Aren't they beautiful?

Are they even more beautiful! The best shot by far!

Gary getting his shirt on.

We are Home and Leaving again..

We are back from the concert and there are no words. It was wonderful. It was....ok here are all the words to describe. Wonderful, emotional, FUN, amazing, Awesome, Excellent! Our family had a great time running around enjoying all the different activities. It was all powered by a great cause. It was not as if we were there for selfish mindless entertainment (although I like that kind too). We were there for a cause. A reason. Sure, it was in the pit of my stomach whole time: I can't believe we are here for not just Mason, but us. Mason. Mason is an inspiration. I am not going to lie. If the Smedley's read things, please please no offense. It was tough. He is so brave. After working up the courage to take Gary up to meet him and his wonderful Mommie, my husband and I hurried away to cry in the corner. Why. Why? Because it is the unknown for us. We were weeping for him and his battle. Heartbroken almost. He is an amazing kid. Gary was thrilled that they had matching tubes. My family was jumping up and down when he arrived. My children came running up to me, "Mom! Mom! Mason is here!". Your a true celebrity to us Mason! Sure Savannah was precious, Jessica was breath taking, but Mason was the man of the hour. I will try and post a few pictures but I am frantically trying to get laundry washed and packed again for hospital. We leave this morning. I will write more on the concert if I get a chance.

Coming Soon!

I am having fun creating a website. This website will sell t-shirts to raise money for Cure JM Foundation. I am still waiting for quotes on my shirts and things. I am planning on linking it to my blog and asking my friends and family to do the same. It will be a couple months before I am up and running. Hint: Mama Tiger!

Before and After

Gary, March 2009


July 2009

Gary at the doctor singing Winnie the Pooh: *Put Music Player (to the right) on Pause*

Change of Plans

:( I have been going around telling everyone that Gary's last chemo Friday was last week. Turns out it's not. I called to check on his bloodwork today and his Aldolase level popped back up. They gave us permission to still go out of town this weekend for Mason's Cure JM concert. They said we need come in Monday however. He will continue with his Cytoxin and Methotrexate. I suppose I have no room to complain. So many patients and parents have been doing this much longer than I have. Gary is still doing well. No complaints. But still was a little disappointing. There was another level that also did the very same thing.

I really enjoy an article the FDA put out today about drugs they are using to treat autoimmune diseases. http://www.nytimes.com/2009/08/05/health/05DRUG.html

We are still going camping though now that we got clearance. The doctor said to make sure he is getting his meds, keep him out of the sun, and she will see us Monday. Hopefully we are leaving tomorrow night. We may wait till Friday morning because I am not sure how Gary would handle a late night trip like that. I would hope he would sleep but sleep has been and issue lately. He has not been taking naps because he gets his big dose of steroid in the morning. It has been taking him longer to turn in for the night as well.

The Plan

So we checked out on Saturday about 1pm. Gary's levels are almost there. A few of them are normal, one is below which is fine. Another is almost there but still on the high side. As I said before, his NG tube stays in until they can do another video swallow to really see what is going on. We find out Tuesday if we are switching to every other week treatments. Gary was a little cranky when we left but perked up when we came home. We spent time with my cousins. I cherish that time. Our family does not get together that often. When we do it is pure bliss. It was the first time since Gary was diagnosed I was able to sit down with them and be an Armstrong girl.

My buddy thinking let's get out of here.


Gary's strength continues to improve as well as his mobility. He is able to pick things up off the ground with less effort. I want to work Gary and push his muscles to rebuild strength. But this morning I told him I would give him a lollipop if he made it up the entire set of stairs (not stepping but crawling up). He did it. He got his lollipop but now he is complaining much more than usual about sitting down but himself and raising a leg. This morning he also had to have his NG tube replaced. He pulled it out in his sleep. Again, I just wanted to leave it out. But I know. We all know. Very soon.

We are also so excited for the CureJM concert in Hillsboro, OR. Our family has not had the opportunity to do anything together this summer because of all the hospital stays. We are taking advantage of it. We plan to do some camping and fishing with The Saas Family.

Swallow Study

Gary will not be having his NG tube taken out just yet. He still is showing signs of difficulty. Bummer, but just as well. He was very in tune this evening with having to have a IV put in. It was not his normal behavior. It was so important to me that they get it on the first try this time. I did everything in my power to ensure that happen. I took him to the tube room and gave him a hot bath. Then gave the nurse specific instructions on how I wanted his hands and arms wrapped. It worked great. The IV nurse barely got the needle in and WA LAA, we hit a fountain. Our schedule is set back right now due to a code blue a few doors down. I have not had the privilege to experience one of those just yet. They are very emotion and amazing. The nurses in every part of the hospital SPRINT like the place is on fire. Security even comes to make sure the halls stay clear. Crazy. Robert got here towards the end and walking thru the hospital seeing everyone running like it was a race to the finish line.

Gary's levels will be back in the morning. The doctors will give us our new plan after that.

Friday Infusion Day

Hopefully this is our last weekly infusion. Today Gary has a swallow study to see where we are at as far as recovery our swallow functions. I think he is ready to have the tube come out. We have had very little choking lately, on liquid and solid foods. He is also needing less rest lately. He can go longer and farther. We also have moved him out of our bed. Since he has been sick, I sleep next to him in our bed. We put a mattress next to our bed and moved him down once he is asleep. Kind of starting over again. Before he was diagnosed, we had him moved into his brothers room in his own big boy bed. We stay tonight for cytoxin and methotrexate. Should be smooth sailing. Last week Gary was hanging onto his blood so they had to draw from his foot. I hope that doesn't happen this week. :( But if it does, he hates it when it is happening but is quick to get over it. I will try and update from the hospital again if I can to let you know about how our levels (should be normal because they were so close last week) and how the swallow study goes.

We are so excited for next weekend! We are going on a camping down toward Portland, then going to the Cure JM concert for Mason. The kids are super excited because we haven't had a chance to do much of anything as a family this summer.

Melting in the sun

Wow, its hot! Gary and the kids have been hanging in the pool quite a bit. We just have to be careful not to get Gary's face wet.

Unfortunatley, after a swim last night his NG tube came out. Just like that. For the first time! Just came right out. The family all got into there positions. Gary on Uncle Bill's lap, Daddy holds hands and keeps his head still. The kids behind us watching. Oh yes, we can't forget Auntie Alyssa. Runs and hides in a corner, rocking back and forth in a fetal position till it is all over. I don't blame her. But it went in, at first I didn't think it was going to go, but gently pushing so it finds it way down. He looked so much better with it out I was tempted to leave it out! Everyone was having anxiety about getting it back in so we didn't waste too much time. We needed to get it over with. Our next overnight infusion is on Friday. We have our appointment at 4. Hopefully this will be our last weekly infusion. There is a meeting on Thursday to discuss what will be done from this point as far as where to go with treatment from this point.

*Sunday*

We went to our church picnic. We all had so much fun. Our church family surrounded us. I could tell Gary was happy to see everyone. I love how Gary seems to know that he is very much loved. He is happy to return that love with hugs. Of course he watches and does as we do, hugging, shaking hands, ect,. But some kids won't do that. I am just glad he embraces that love in his two year old way. It was so good to see everybody and not be in the hospital for once. Praise God.

My Uncle Tom stopped by yesterday. It has been awhile since we have seen him so it was a pleasant surprise. Uncle Tom, if you find your way to our blog, we love and miss you so much. We will be praying for your diabetes and your familys health.

Levels & Water

Our levels are almost normal. I was hoping for normal but they are down a little bit again. We got in a little bit of trouble for drinking water. I have been trying out different foods and gradually increasing what he eats. The moment he shows difficulty I say all done and remove the food. This morning the nurse came in and said that the doctor ordered nothing by mouth until we could get another swallow study done. I said, "I need to speak with someone, because he has at least been cleared for ice cream and things of that nature." So the doctors came down and talk to me. They stressed that the risk of getting any food or water in his lung is not worth the result. They highly recommend no thin liquids, and only soft mash potato foods. I kinda felt like I was getting busted for getting a little over enthusiastic about the return of his swallowing capabilities. They are so right. I know Gary though. I know what he can and cannot do. Then again, my caution has detriorated. I am just so ready for him to be normal again and get the dang NG tube out. I think it will be awhile until that happens. The goods news is his levels were down enough to lower his steriod by 6mgs. Next week when we come in for our LAST weekly Cytoxin infusion, we will have bedside evalutation done and another swallow study done. In the mean time they told me to back off with the food and water. I may think it is time, but they don't. Unfortunately they can back themselves up because during our clinic visit yesterday Gary handed me my bottle of water and asked for a drink. I was so focused on what the doctors were saying I gave him a little sip without thinking. They were a little shocked. Of course he sputtered and coughed on it. He doesn't always do that! Uggghhhhh. Darn it. "Nothing like a little water in the lung," says the doctor. He he he?? I wanted to hide. I frantically tried to explain that I didn't mean to give him the water, but we have been trying at home and he was doing ok with it. Bad timing I say. BUT a big BUT, I will not jeopordize Gary's recovery and go back to obeying the rules. Rule number one, do not put our child in ICU by pouring water into his lungs.

Friday Infusion Day

Today we have our overnight of Cytoxin and other fun stuff. I am so excited to see where Gary's levels are at this week. He is still recovering which means he is still getting strength back. So great! I will update from the hospital later on this evening if I get the opportunity. Love to all.

AUCTION for JDM

http://www.youtube.com/watch?v=3BgzsEGxMWg

Excellence

I am having a wonderful time watching Gary catch up. He is doing new things everyday. He can now get on and get down from the couch by himself! He even tried to run. I am really looking forward to lowering steroid doses so we can get some of the weight off. His personality is returning. He is sweet and likes to laugh. He can do stairs if you help him lift his leg. After recovering from "Chemo Friday", he got his energy back. He is also starting to eat more with less choking. I am excited to see what this Friday appointment brings! I think he may be ready for a swallow test. Hopefully we can start the tapering of steroids. His rash looks pretty good too. He seems to be tolerating the sun a bit better as well. As far as his eyes, they seem fine now. He must just have been super tired and full of iv fluid. On Monday, he had his first physical therapy evaluation. He had fun playing with all there toys. We qualified for at home care which will be nice. I requested that once we are off the immunity suppressing chemo, that we move his sessions to the center so he can get a change of scenary. I still cannot believe how fast the summer is flying by.