Saturday, May 15, 2010

Infusion Days 3 & 4

Days 3 and 4 past much like the first two, with the exception that we were much better able to stay ahead of the symptoms. We gave him more medicine as prevention instead of as treatment after symptoms began. He still felt pretty crappy but it was manageable. The high blood sugars continually add to the over all crappola feeling.

T's blood sugars had steadily climbed up and yesterday the hospital meter greeted us with a rather sarcastic "HI". Not a "Hi, glad to see you," kinda "HI", more like a "HI" your blood sugar is over 500 "HI". Not cool. Especially considering he was due for another dose of steroids in 5 or 6 hours as per clinical trial protocol. Steroids have a well known side effect of causing high blood sugars, even in people without type 1 diabetes.

When T entered the hospital his insulin needs were very low, thanks to his ongoing honeymoon. He took 8 units of lantus in the evening, took 1 unit of insulin for ever 45 grams of carbs for breakfast and lunch and 1 unit insulin for every 65 carbs at dinner. Sometimes he could eat without any insulin at all. He would take 1 unit for food typically and no insulin to correct his sugar. Last night he took 25 units of lantus and is now on a 1 unit of insulin for 5 carbs at meals. I will spare you all his correction calculation because my brain is mushy from sleep deprivation. Suffice it to say that it is impressive. That meant he took 29 units of insulin for correction and a no carb dinner last night. Hard to believe. I know that as he grows and his body continues to change his insulin needs will increase and that those numbers may become a norm for him. But for it to happen within 24 hours, and for him to still be battling 500 blood sugars, makes it hard to wrap my little brain around.

Dr G said he had never used that ratio for someone T's age. At least we will be memorable. Dr G was uncomfortable enough (and I was freaking out enough) that he decided to scrap the last dose of placebo/steroids. I was relieved. His blood sugars have come crashing (safely) down and we hope to be back to "normal" within 48 hours or so.

Our journey with thymo isn't completely over though. It has a sneaky way of hanging around and reminding you of your hope/hate relationship. Everyone who has received the study drug has a return of moderate to severe flu symptoms called serum sickness 7-10 days after infusions. A not-so-friendly little reminder to the t-cells to turn the hell off and leave his pancreas alone!

I would love to write about T's awesomeness but I am too emotionally fragile right now. Too sleep deprived. Too jumbled up. Full of hope and admiration. And love.

To all of you family, friends, D-parents, and people rockin' life while coping with D who have followed T and sent your love, energy, prayers and spirit- from the bottom of my squishy, mushy, full of love heart- THANK YOU.


Thursday, May 13, 2010

Infusion Day 2

Unabridged Version.

2am-8am Sugars are in the 300-400 range. Continually chasing highs with ever increasing insulin.

8am Blood draw for study.

10:30 Premeds of tylenol, benadryll, long talk with Dr. G about insulin overhaul and stacking insulin crash course for T and I. Super good info.

11:25 Diabetes educator Jeanne arrives bearing gifts- a free ketone meter WITH strips. Score! Have I mentioned that we love her?! T and I also try pump sets for delivering insulin from an insulin pump. T tries the stainless steel Sure T and I try the Silhouette. We both like our choices. I feel better knowing how it feels and T thinks that the Sure T will work well for him.

12:04 Main event begins. Thymo/placebo infusion begins. Completely uneventful. Vitals every 15 minutes begin. Grady the Superman nurse is back on. He rocks.

1:15 Very sweet nursing student comes in to take T's vitals. She is looks like she is about 12. A Hannah Montana commercial comes on and she says, "OMG, I totally love this show, it's my favorite! I watch all the time.", completing confirming my previous age guess. Reassuring-not so much! So glad for my own experience and Grady's back up.

3:00 Blood sugar 386, 6 units of insulin. T has a headache. C, L and Grandma arrive for much needed visit and snuggle time. Great distraction.

5:00 T is tired, flushed, headache, Blood sugar 492. Not cool. Ordered dinner. 17 units lantus insulin.

5:45 Dinner arrives. 25 units of insulin for correction and food coverage. Not gonna lie- freaks me out a bit. T is feeling crappy but ok. Hungry.

7:00ish C,L and Grandma head for home. They miss Sam arriving with food and coffee by minutes. Nurse shift change. Cheryl is our slave (ERR I mean nurse).

8:15 We start Princess Bride because our good friend Meri says it is the funniest movie ever and we could use a good laugh.

7:45 T says,"Mom my PICC line hurts. It hurts a lot. Into my arm pit and shooting pains down my arm." Call the nurse. Explain. Worry about blood clot. Call attending physician. Check vitals and temp. Vitals ok temp is 99. Worry about administering drugs into potential clotted PICC line, knowing that the chances of it being clotted are really rare.

7:55 Check PICC line and it is fine. T says, "Now my heel hurts, now my other calf, my back." Vitals, temp and realize we are dealing with thymo. The infusion finishes at 8:05. The side effects have hit T like a freight train of swine flu, bird flu and every other crappy virus on the planet. Temp is 103. 4 degrees in 10 minutes. Nurses frantically getting drugs. Demerol, benadryll and ibuprofen. I request zofran knowing that the demerol made him nauseous. Rigors, fever, severe body aches. Get the demerol and benadryll onboard. And then our favorite crappola side effect vomiting joins the thymo-wreaking-havoc party. The zofran just wasn't in time. Because of nausea, T couldn't take ibuprofen to help alleviate symptoms. Everything happened so fast. The staff worked really hard to help out and get things under control. Unfortunately, when things fall apart that fast catching up to the symptoms takes time and is more challenging.
I have never seen T this miserable. DKA looked like a mild cold. T was never in danger as far as his safety like during DKA, his vitals were stable and EKG was fine. He just felt the WORST he has ever felt. I spoke with Dr G at 10 to weigh our options. Trial protocol requires an administration of steroids/placebo (at this point who am I kidding-steroids!) at 12 hours after the beginning of the infusion. Steroids would greatly eliminate the side effects. I hated to give him a dose at ten and then have to dose him again because of protocol 2 hours later. That said, I was ready to do ANYTHING to make him feel better. This was too much to ask. I had been wracking my brain and asked Dr. G about a drug called toradol (sp?), it is an NSAID like ibuprofen but can be administered by IV. I agreed to the steroids and asked for the toradol as well.

10:40 T has had a change for the better. He is able to talk again a little and even managed to smile. He is so strong. I can't even describe how incredibly impressed his family and the staff here are with him. We get the toradol on board. Vomiting still. Blood sugar has gone from 480 to 150. Remember the 25 units of insulin on board. Not cool. Decide to hold off on steroids hoping toradol saves the day. Toradol just maybe T's new BFF.

12:04 Steroids. T still feeling crappy. Went from a 9 (scale 1-10) to a 7. I would sure hate to see his ten. Blood sugar 115- nausea subsided enough we decide to have him eat 2 licorice sticks- 20 carbs.

2:00 T finally has some relief and feels much better. Sleep.

3:00 Blood sugar389. Hello steroids.

The worst should be behind T. Typically the first two days are the hardest. Most people do better with the third and fourth day infusions. We will be even more diligent today as infusion day 3 progresses. Now that we know how symptoms can sneak up from nowhere we will be premedicating with bigger guns sooner.

T and I spoke this morning-I reminded him that this was voluntary and at any point he could unvolunteer with our full support and admiration. He looked at me and grinned' "Are you crazy Mom? I'm half way through- I'm going all the way." I knew what he would say before I asked.

Tuesday, May 11, 2010

Infusion Day 1

24 hours- the Abridged Version

12:00 Am Blood Sugar Check and vitals. 182. Coming down. T is sleeping. Working on blog knowing I should be sleeping. Fake chair bed isn't looking all that inviting.

1:30 Lay down on parental torture device(PTD) also known as chair bed. Finally drift off into semi sleep and dream about the frogs at my parent's pond keeping my Dad up. I know weird!

2:00 Blood sugar check and vitals. T sleeps through- how I don't know, but he does. 136. Much better. Drift in and out of sleep.

4:00 You guessed it- blood sugar check. 117. Leave him alone knowing that he always creeps up a bit between 4-7 am. T slept through-again!

6:00 Time for lab draw for clinical trial. Took about 6 vials of blood. Got lucky- no finger poke this time. Blood sugar 137. See, told you he goes up a bit every morning. Usually he is 120-130.
Full set vitals. T wakes up this time. We both lay back down, knowing that the next time he wakes up it will be time to start the infusion. We just have to wait for the labs to come back.

8:30 Nurse comes in to premedicate T with tylenol, benadryll and prednisone (steriod)/placebo. I wipe the drool off my cheek hoping he doesn't notice. The print imprinted on my face from the PTD is a little more conspicuous. T takes the pre-meds and orders breakfast. I attempt to become presentable and go get COFFEE.

9:00 Blood sugar check (117), carb count, insulin and T eats breakfast.

10:00 Labs are back and it's infusion time. The bags are hung and connected to the PICC line. This is really it. T is optimistic and a little apprehensive. I am a jumble of emotions and find myself holding back tears. Not really sure what to feel. Dr. Gittelman is here and we chat for awhile. I like him. So does T.

10:15 Full Set of vitals. For the first 8 hours of the infusion a full set of vitals are taken every fifteen minutes. I will spare you all posting that every fifteen minutes. T had his own exclusive nurse named Grady today. He was awesome and took great care of T. He was here like clock work and at our beck and call. Awesome.

10:45:T announces he has headache. More tylenol and ibuprofen. Blood sugar check. 266. Hhhmmm. Dr. Gittelman comes in to check on T and does full exam. More talking. I like that he completely includes me and my opinion about meds and management.

11:45 T feels "funny". Blood sugar check-346. Order lunch. Lunch arrives, carb count, insulin with correction, and eat. Headache is still there. Dr Gittelman again.

1:00 Diabetes educator comes by. She is awesome and has type 1 herself. She gets it. We REALLY like her. We chat for a long time.

2:00 Dietitian comes in. Sort of redundant but a very nice woman. We chat awhile. More tylenol, T still has headache. Still doing full vitals every fifteen minutes.

3:00 Hospital teacher comes by, T is not really feeling up to work or going to the classroom. I can see just how disappointed he is to not do homework. (I can't figure out how to write in sarcasm yet) T is feeling disappointed, starting to doubt he received thymo. We chat. I still think it is too soon to know. Blood sugar check-can't remember. It was over 300 and T can sure feel it.More ibuprofen for headache.

4:30ish T has changed. He is not quite as chipper. Flushed. Headache is increasing. Fever. Chills. Achy. Overall starting to feel pretty crappy quite suddenly. Dr. Gittelman came right in and we started going over options. Hooked T up to EKG machine and oxygen sensor as a precaution. Full physical assessment. Decided on demerol, the other option being steroids. Sugars are still in 300+ range. Decide to change insulin ratios and correct more often.

5:00 Nausea. Zofran (anti nausea drug) Going to have to postpone dinner a little while.

7:00 T is laughing hysterically and a little too loudly at America's Funniest Home Videos. Safe to say he is feeling better. Sam arrives with dinner and COFFEE. He is my hero. T checks blood sugar, 206, carb counts, insulin with correction and eats.

8:30 Dancing With the Stars and hanging out. T is feeling better but highly medicated. He will continue to receive tylenol, ibuprofen and benadryll on a rotating schedule from here on out. Text back and forth with C. I miss him and L. I am so grateful my mom is there to make this easier on them. My parents have been amazing support for our family. Not sure what we would do without them.

9:00 T's skin is hyper sensitive and feels strange to him. No rash. Change dressing on PICC line and another blood sugar check. More vitals. I shower because I am embarrassed to be in public anymore and because I want the nurses to like me- not smell me. I almost feel like a human again when finished.

10:24 First infusion officially ends. T will be closely monitored tonight. Hoping for an uneventful night. Side effects seem managed at the moment. Hoping he can get some sleep.

Blood sugar checks and corrections will happen every three hours tonight and vitals, temp, etc every hour.

Infusion starts again tomorrow morning. Todays infusion was set for 12 hours. Tomorrow he will receive the same amount in eight hours. We will take it one minute at a time. While T is feeling confident he received thymo, I am still cautiously optimistic. Honestly, sometimes I don't know what to wish for. Thanks for all the love, we can feel it.

Monday, May 10, 2010

UCSF Is a City

So here we are, Day 1 down.

Our day went something like this. 24 hour version

Finished packing and bookwork at 1 a.m. Climb in bed exhausted.

2:30 am Crazy dream that if I shared here might result in many of you no longer following my blog and possibly to stop associating with me. I will spare you the details.

3:30 am Blood sugar check. 145 Sleep.

5:30 Dog and husband snoring and I have no covers.

6:00 Why bother?! COFFEE! Got up and finished packing and food preparation.

6:30 T is up and showering.

7:00 Blood Sugar, carb count, insulin, breakfast. C up and getting ready for school and the big track meet.

8:00 COFFEE and hitting the road. Traffic.

9:25 Minor freak out in claustrophobic, scary parking garage. Driving around in garage made for mini-coopers in a suburban in circles. Realize I might have had too much coffee. Found a spot on the pink floor by #71. Accidentally go down in the elevator and should have gone up. Go up and get out of elevator and walk down some stairs to get on another elevator to go down to street level. Yes, it is designed that way and no, there are no signs. I need GPS to get out of the parking garage. T is cool and calm; me, not so much I'm but I'm pretending to be.

9:30 Bathroom and yep- you guessed it- COFFEE. 'Cause I am just not quite wound up enough.

9:45 Arrive

Follow our handy-dandy instructions perfectly through the maze of hallways to the appropriate set of elevators and up to the sixth floor. Check in with spunky woman at elevator and tell her that we are here for clinical trial. T doesn't exist in paperwork but she says that's ok- go ahead. Wind our way back through multiple hallways to the Pediatric Clinical Research Center. Check in with nurses. They know who T is and take us to our room. Cool. T is joking and making small talk with nurses. I'm feeling pretty good and kinda relieved. Weight, height, blood pressure, temp, questions. We even have a view.

10:15 Nurses realize that we didn't go to admitting. That was not on my handy-dandy instruction sheet. Apparently, they think you should just know that by osmosis or something. I don't learn that way- I learn by reading. So off to admitting. The nurses say as soon as you are done head back up here.

11:45 FINALLY done at admitting. Apparently- our room- that had all our stuff (except our food) in it "wasn't ready yet". So typical hospital. Paper work and hurry up and wait. Receive picture of C running in the pouring rain with huge grin on his face at his track meet.

12:00 Arrive at our room that is still full of our stuff that wasn't ready. Dr. Gittelman and clinical trial nurse come in for final consent form to be signed. All my "what if's" resurface. T is cool, calm and collected. T checks blood sugar 130.

1:00 Ask about ordering lunch. Told we need to wait because his orders for insulin haven't been made yet and diabetes nurse needs to go over insulin/carb ratio. Find out C's track meet had been rained out. :(

1:45 Insulin orders are now in and T can order his food. Gee thanks. Pick up phone to order food. It's dead. Pull on the cord and it ends in frayed wires. Not so convenient for ordering lunch. They put an order in for a new phone. I ask them to please order him some food. It's not like he's diabetic or anything. I know that they are coming to do the PICC line anytime and am afraid to leave to go to the truck to get food or to go to the cafeteria. Hospital law is that regardless of long you have waited to go to the bathroom, eat or shower, when you leave your kid alone for more than 2 minutes, the doctor or procedure you have been waiting for shows up.

2:00 PICC specialist arrives and off we go to a sterile room. A PICC is a long catheter that is placed in a vessel in the upper arm that extends into the vessel in the chest cavity. They use ultrasound to guide the catheter into place and x ray to confirm it is placed correctly. It is very uncomfortable. T refused pain meds and opted for a local injection. Because T is thin and his vessels healthy and strong it wasn't an easy placement. He is so awesome. He did great. Calm and collected through the whole ordeal.

2:40 I can tell by looking at him he is going low. 85, not terrible but he needs food. Get back to the room, check blood sugar, count carbs, insulin and finally- he gets to eat.

4:00 Nurses change shift and we go over everything we have been over six times- again.

5:00 T watches Batman (thanks Meri!) while I disinfect the room and then read a bit. Work on blog.

6:30 T and I go up to the Teen Lounge for a little Rock Band II on PS3. T rocked the '80's.
Order dinner. Much smoother with operating phone.

8:00 Back to the room. Blood sugar check 98, carb count, insulin, eat.

8:45 Sam arrives for a visit. I go to find some food for myself and get completely freakin' lost. For a woman who grew up in a village of 1200 people UCSF is a like a big city. Much of the hospital is under construction and being painted so many of the signs are missing. Thank goodness everyone here has been kind and helpful and not teased me to badly! Miraculously arrive back at the room and watch a little Dancing With the Stars and catch up on our day. Get picture of L in her favorite Dancing With the Stars out fit on. So cute. Text C goodnight.

10:45 Sam heads home. Blood sugar check 345. WTH?! Wash hands and recheck. 342. Hhhmmm. Highest he has been since the week we left the hospital. Either the hospital can't carb count or his sugar are reflecting his stress. I allow a half a correction to prevent an overnight low. Only meds he has had is tylenol. Any d-moms know if it can spike blood sugar?

11:30 I think I am done for the day, T is sleeping. Will check sugars at 12:30 and 2:30.

Blood draw at 6 am and pre meds of tylenol and benadryl. First infusion of thymoglobulin or placebo starts around 7 am.

Thank you everyone for you support and thoughts. I will update as I can. I can't put into words how brave I think T is for doing this. We love him so much. Thanks for following us on this journey.

Friday, May 7, 2010

It's Official-the Clinical Trial is ON!

If you had told me three months ago that I would be voluntarily signing my son up for a clinical trial, where he would receive a drug that was used for organ transplant rejection and chemotherapy I would have told you to take a flying leap from a very tall building without a parachute. I would have said "not unless hell freezes over". I would have said NEVER. Just like the time Sam wanted to live on 30 thousand-some-odd acres and take care of a bunch of wild cows (which we did) and just like when he decided that we should move to California (which we did). I am going to stop saying NEVER.

Over the years we have worked hard to teach the kids about how to stay in tune with their bodies. We have stressed how important it is to take care of themselves and have educated them to be responsible for their own health care. Doctor's and medicine don't heal people, they support the body to heal itself. We have focused on teaching them to question, research and advocate for themselves. To always trust their own instinct and follow their gut feelings.

While T was still in the hospital dealing with complications of his diagnosis with diabetes I was all ready researching. The last day of our hospital stay we were presented with clinical trials that were available for kids newly diagnosed with type 1. They presented the options to us and a lot of paperwork to read over.

Deciding to do a clinical trial is a process. T is 13 and the ultimate decision is his. This is his body and his choice. We talked it over and he was very interested, so the research and questions began. There were three separate steps to take to be included in the trial. The first was a series of blood tests, the second a test for tuberculosis and the third a Mixed Meal Tolerance Test (MMTT). The MMTT test is to help determine if T's body is still producing any insulin on it's own. T met all the criteria of the trial. The medicine must also be administered within 100 days of diagnosis.

In order for any of this to make sense you will need some background info. Type 1 diabetes is an autoimmune disease. T cells are a part of your immune system that help fight viruses, infections etc. and sometimes these cells go rogue-they don't switch "off" when they should and they attack the cells in the pancreas that produce insulin. When this happens and enough cells that produce insulin are killed, symptoms of diabetes occur. Insulin is the bridge between your cells and the sugar that they need to function. After someone is diagnosed and starts to get insulin they often have what is called a "honeymoon" period. The rogue t-cells haven't destroyed all the insulin producing islet cells yet and the pancreas still produces some insulin. Some people still have up to 40-60% of the islet cells still functioning. This makes diabetes easier to manage.

The drug used in the trial is called thymoglobulin. There will be 66 people in the United States enrolled in this trial before it ends. T will be number 23. This is a double blind placebo trial. The doctors and patients won't know if the patient is getting the medicine or a placebo. 2/3 of the participants get the medicine and 1/3 get a placebo. Thymoglobulin has been used since the 1980's and is a pretty safe medicine, however it does have side effects that make you feel like you have a bad flu. They are temporary and go away when you stop taking it. The medicine is given in the hospital over several days into a special IV called a PIC line. Thymoglobulin is being studied because scientists and doctors believe that it may "reset" those rogue t cells of the immune system and turn them "off" so they stop attacking the pancreas. Hopefully this will extend the "honeymoon" period.

Scientists and doctors recently announced that they were able to create human pancreatic islet cells that produced insulin in mice. This is a huge break through. They need to study thymoglobulin to see if it prevents the immune system from attacking these pancreatic islets cells. It won't do any good to replace the cells if the body destroys them again. The trial is designed to compare people receiving the medicine to people receiving a placebo during their honeymoon phase. The hope is that it will stop the t cells from attacking the remaining insulin producing cells, preserving them and making diabetes easier to manage.

Thymo is a safe, but serious drug. Participants who recieve the drug also get steriods and antibiotics to manage the side effects. Participants who get the placebo get identical appearing medicines that contain no active ingredients. Most participants who get thymo feel like they have the flu for the first few days of getting it and then 10-14 days later they feel like they have the flu again.

T will be admitted to UCSF on Monday at 10 am to start the trial. The decision has been agonizing at times, but I feel more comfortable with it than I ever thought I would.

Deciding to participate in this trial has been a challenging decision. Probably the most difficult one I have ever made. We have talked and researched and questioned endlessly. T has been very involved and has asked educated, poignant questions. I am hesitant to speak for him because he has had his own journey in making his decision. His reasoning for participating is sound and difficult to argue. I have "what if'ed" myself to misery on many occasions. I have always told the kids to trust their instincts and I am proud to say that he is. Deep down, I knew he would participate and that we would support him. Every time the word "NEVER" screams in my head I know it is time to check in with myself. Some of "my stuff" is coming up. When it happens it usually means that I am afraid to follow my gut instinct. Eventually, through processing, soul searching and introspection I come around and then I am all for it.

Now when the fear creeps in and the "what if's" start I always end it with "What if- it works?"