Wednesday, September 30, 2009

I thought I would take a few moments and post an update since we've been home for a while now.

Tanner is doing well and is going to Cook Children's Hospital on Mondays and Thursdays for labwork. On Mondays he sees the Oncologist, Dr. Sam Davis, and they run the blood work (including "serum" tests for which they have been provided special vials from Dr. Barlogie) as instructed from the Myeloma Clinic in Little Rock. Dr. Davis' office faxes the results of the labwork back to Dr. Barlogie's office and I take the vials of "serum" to UPS and overnight them to the Lab in Little Rock. Four days after I overnight the vials I call to get the results. The nurse told me that things look good and that Tanner's numbers are coming down. The only thing that concerned her was that his "ratio" went up from 8 to 43 and she told me that we would have to "watch" those numbers. When I asked her what that meant, she told me not to worry about it and that it was probably caused because all of his numbers were coming down.

Yesterday I overnighted this week's serum vials so I will call on Friday to check on the results. If the "ratio" numbers are still rising and are a concern to her I will see if she can explain to me exactly what the numbers reflect.

My boos, Bruce, took Tanner to the Cowboys game in their new stadium Monday night. It was Tanner's first time at a professional football game and he had a great time - and the Cowboys won!!

Friday we are going to a "Tanner's Remission Celebration" dinner at Granny Jane's house. It will be great to see everyone! We haven't gotten to see much of the family since we returned home because most everyone has been sick! The flu is really making a run through our family members here in Fort Worth and Tanner surely doesn't need that!!

We will be heading back to Little Rock on October 13th and he already has a full day of tests scheduled starting at 7:00 a.m. on October 14th. We will see Dr. Barlogie on Friday the 16th and are anxious to hear what he will have to say about the results. Hopefully, we will hear remission, remission, remission!!

Thursday, September 17, 2009

Back in Fort Worth!

We arrived at home around 4:00 p.m. yesterday evening and both got to sleep in our own beds. Yea!! Beckett didn't recognize his Uncle Tanner without hair! I wonder if Kayleigh will know who he is?

Today it was back to normal for me at work and Tanner was at home taking it easy and playing video games.

I called the Oncologist office at Cook's Children's here in Fort Worth and starting next week, will take Tanner in on Tuesdays and Fridays for his labwork.

This weekend he wants to spend some time with one of his friend's in Weatherford. I worry about him not using his wheelchair like he should and being around a lot of people but know that I have to let go and allow him to spend some times with his friends. He's been with older people for three months now and is ready to be with some teenagers! I will lay down the rules before I take him to Weatherford and have also been talking to his friends about his health and how important it is for him to be careful and to use the wheelchair.

While we are at home, I won't be updating the blog every day unless something significant occurs but will be sure to post regularly when we return to Little Rock on October 14th.

Once again thank you for all the love & support we have received from friends, family, and even strangers! We couldn't have made this journey half as well without you all!!

Tuesday, September 15, 2009

Tanner and I are HEADING HOME TOMORROW morning!! Yea!! Yipee!!

His platelet count only rose to a 44 so we thought we might have to stay another day or two but Dr. Barlogie said they could go ahead and take the lines out since the numbers were coming up more and more every day. Then they called the doctor at the hospital to schedule the line removal and he said no, he wouldn't take the lines out until he reached 50!! Dr. Barlogie's office had to do some fast talking about Tanner being a 17 year old who hasn't been home in 2-1/2 months and the doctor at the hospital gave in. The lines came out without any problems and we get to come home until mid October.

They have him scheduled for a full round of tests starting first thing in the morning on October 14th so we will head back up here on the 13th. Tanner is just so very excited. He wanted to jump in the car and head on home even though it's after 6:00 p.m. and we were at the hospital and doctor's office all together 6-1/2 hours today. The doctor's office needs us to go back up and drop off a 24 hour collection first thing in the morning, then we are going to stop and have breakfast with Aunt Tincey and then we will be on the road to Texas. I'm not looking forward to the drive but I am looking forward to being home for a while and sleeping in my own bed!

We will have to go and see Dr. Davis (the Pediatric Oncologist in Fort Worth) twice a week while we are at home and the clinic here gave us some boxes and instructions to give them for the required labwork. He will need blood drawn twice a week and for one set of tests they can just fax the reports back to Dr. Barlogie's office - but for the other set of tests the blood will have to be put in special vials and then we will have to ship them back here to Little Rock.

I will be forever grateful that the doctors in Fort Worth referred us here to Little Rock where we found Dr. Barlogie. Now that I can see the light at the end of the tunnel, I can admit how very scared I was when I was first told the diagnosis. When Dr. Richie-Gillespie called me at work to tell me that the pathologist had come back with a diagnosis of cancer, it completely rocked my world. I fell apart and everyone at work was trying to find out what was wrong and to console me (which is why the doctor called me at work to give me the news - so I wouldn't be with Tanner when I first discovered the diagnosis).

I will always remember the relief we all felt (me, Tanner, Granny Jane, his Dad and Step-Mom)when we were all at the oncologist office in Fort Worth and the doctor told us he was sure that the cancer was contained all in one spot and that it wouldn't be any problem treating the area. Then the total shock when just a little while later we were put in another room and the full body scans were brought up to show us that the cancer was in multiple bones all through Tanner's body. It took everything I had to just not start screaming. The only thing that held me together was the fact that Tanner was sitting there in the room. Truly, there are no words to describe the feelings that were going through me at that moment. It was a parent's nightmare and I can only imagine the thoughts and feelings that were going through Tanner's, and everyone elses, head at that moment.

The doctor's in Fort Worth were just not very reassuring at all and admitted to me that they didn't know what to do for Tanner and that I needed to get him to someone who was an expert on his disease. I was just scared to death.

Then we got here to Little Rock and Dr. Barlogie told us that Tanner could be cured. He had the results from all of the tests and he said he truly felt like he could cure him and Tanner could have a long and healthy life. Can you imagine the relief; the hope?

One thing that has gotten on Tanner's nerves while we have been here is that he finds me looking at him. He gets on to me and tells me that "staring" gets on his nerves but it's something I've found I can hardly stop doing. I look at him. I look to see if he looks weak, or sick, or if he's lost more hair. I just look at him because I love him so very much and I have to reassure myself that he's okay. I am so relieved that he's here with me and thanks to the treatment he's received, is going to be okay. I'm trying to stop "staring" and when I catch myself, I look away. I know that one day Tanner will have children of his own and then he'll understand why I've had to look at him so much. I just have to reassure myself that all is well with my baby.

Being in Arkansas the last two and a half months has been a small price for us to pay for Tanner to have received the life saving treatment that he has gotten here and I will be forever grateful to Dr. Barlogie and the staff at UAMS for taking care of him and never hesitating with his treatment even when our insurance started denying coverage.

I am also so very blessed to have an employer who didn't hesitate in allowing me to stay in Arkansas with Tanner and went above and beyond what anyone could expect in supporting me and immediately setting me up so that I could work remotely - and for my co-workers who have picked up the slack left by my absence in the office. I'm so grateful for my agents, friends, family, and strangers who have contributed to Tanner's Medical Fund which made it possible for us to rent the apartment so that we could have a "home" that Tanner could return to every day while he was so sick from his chemo treatments.

So many people have reached out to us and our lives have been changed forever from this experience. My faith in my fellow man has reached an unimaginable level and Tanner and I will always be grateful to you all for the love and support we have received.

I know that the journey isn't over and there will be more rough days ahead. But, at least now we are traveling with the assurance that there are also many, many better days to look forward to.

Monday, September 14, 2009

Sorry, I'm running a little late on the update today. We just got in from dinner (On the Border - LOL!) with my boss Bruce and his wife Cheryl who are here in Little Rock for a couple of days. It was wonderful seeing them and we had a great time! Bruce told Tanner that he would take him to see a Cowboy game at the new stadium when we get back home. He can't wait!!

Tanner's platelet count is a 36 today and the PA says she feels pretty sure that he will be over 50 tomorrow. Since he hasn't had a growth factor shot in a couple of days, they say he should have a big jump in the count overnight. I sure hope so because he is counting on going home!!

We go in at 11 in the morning to have labwork and then we will go see Dr. Barlogie at 1:30 p.m. and should know by then what his numbers are. If he's reached or surpassed the magic number of 50, they will make Tanner an appointment to get his triple lumen line removed (they won't let him go home with lines in his jugular). Usually they can make the appointment for his lines in the same day so Tanner is really counting on getting everything done tomorrow.

I told him by the time we get all of this done (if we CAN get it all done tomorrow) it will be late by the time we are through and that we should wait until Wednesday morning to drive back to Fort Worth. The last time I left late in the evening, it was a pretty exhausting drive with headlights all blurring together to the point that I thought I was just going to have to pull over somewhere and take a nap. I had to call my cousin and talk on the phone to just keep myself awake to finish the drive. I told myself then that I wouldn't make the drive at night anymore.

Tom, another caregiver who's wife Shirley is also undergoing treatment at UAMS, came over to the apartment this afternoon and gave Tanner a card with some spending money in it for him to use for himself when he gets back to Fort Worth. We have met some really wonderful people while we have been here and I know that we will never forget them!

I hope that we get to see some of them again when we come back from break. We are so ready to go home but will truly miss our new friends that we have made during this phase of Tanner's journey.

So... I'll update tomorrow as soon as we know what the plans are but we are counting on coming home!!!

Sunday, September 13, 2009

Things are still looking good! Tanner's white blood count went from 2.25 yesterday to 5.83 today and his platelets have come up to 30 (nearing that magic number of 50)!! The fact this his white blood count has been over a 2 for two days means that he doesn't have to have any more growth factor shots in his stomach - which in turn means that his platelets should start coming up at an even greater rate!!

His blood pressure dropped really low when he stood today at the lab so they had to give him another bag of fluids. I need to start trying to get him to drink more - even though he tells me nothing tastes the same.

Yesterday when we came back from the hospital and were getting ready to go and meet my aunt at On the Border, we came by the apartment to put his infuser of potassium in the refrigerator. We decided since we were just going to go right in and out of the apartment, Tanner would just use his crutches instead of the wheelchair. By the time he got from my car to the door of the apartment, he was really weak and light headed. It was an eye opener for me that even though he is doing so much better, he still has a ways to go.

The orthopedic surgeon has told Tanner to use the wheelchair as much as possible to help protect the right femur from breaking (since it is the biggest lesion he has and there is very little good bone left in that area) so he has been using the wheelchair pretty much all the time for over a month. It's like a catch 22; he needs to use the wheelchair to protect the bone in his right leg but he's gotten even weaker from not standing and moving around at all.

It makes me worried about how he will do when we get back home. Granny Jane has offered for him to come to her house but he just so very much wants to be at his own home. He tells me that he will be okay at the house by himself while I go to work but I'm worried about him falling while he is there alone. Bruce has said he can come to work with me, but he also needs a comfortable place to rest during the day.

I feel that maybe Tanner needs to use the crutches more while we are in our house, but then we need to also protect his right leg as much as possible to allow the lesion on the right femur to heal. I guess I will just ask Dr. Barlogie Tuesday what he thinks and we will take it from there.

Tanner is staring over my shoulder waiting on me to get through with the computer so he can go online, so I guess I will come to a close for today. It's a rainy Sunday afternoon here in Little Rock and I had to set my alarm for 3:00 a.m. to change Tanner's infuser and it took hours to go back to sleep so I think a nap is called for...

Saturday, September 12, 2009

Tanner isn't neutropenic anymore! His white blood count has risen above a 2!! Yea!!! This means he has an immune system and can take the mask off and be around other people again. We met my Aunt Tincey, Julie, Aulstin, and Sarah Catherine for mexican food at On the Border (where else?) to celebrate.

Now, once his white blood count stays above a 2 for two days, they can stop the growth factor shots and his platelet count will start to rise. I don't know how long it will take to reach 50 (the magic number that signifies when Tanner can go home) but I figure we should be able to leave by mid to late week next week. From what the doctor said, we will be able to go home for three to four weeks for a much needed break. When I asked the doctor what happens when we come back to Arkansas after the break, he told me we would talk about it at our appointment next Tuesday afternoon.

No matter what comes next, Tanner really needs this break and the chance to come back to Fort Worth for a while. He is looking forward to seeing his friends and family and has resigned himself to the fact that he won't be able to drive yet (mom had to be the bad guy about driving but after a while to think about it, he tells me he understands). His dad's job has made it impossible for them to come back to Arkansas the last few weeks so I know that he and Janet are very anxious for Tanner to get back to Texas.

One of the other patients told us that Sam Walton (the founder of WalMart) had Multiple Myeloma and underwent treatment in Houston where he met Dr. Barlogie and is the one who talked him into coming to Little Rock and helped fund this treatment and research facility.

The staff here at the Myeloma Institute for Research and Therapy and UAMS have been so courteous and caring to Tanner and he has received the best of care. Everyone from the valets, to the nurses, to the doctors have been so kind. We walk through the halls and every day the staff takes the time to stop and ask Tanner how he's doing and spend a few minutes talking with him. I truly don't think I've ever experienced a more caring staff than the one they have assembled here at UAMS. We really couldn't have asked for better care than Tanner has received in Little Rock!

Friday, September 11, 2009

It's been a fairly quiet day. Only three hours spent at the hospital today. That's a short day!

Tanner's white blood count went from .15 yesterday to .52 today and his platelets are 28. I'm sure the platelet count will fluctuate until his WBC reaches 2 for two days and they can quit giving him the growth factor shot. The nurse said with him being so young and having reached nine days post transplant, the WBC numbers could make some dramatic jumps at this point. His blood pressure was low so they gave him a bag of fluids. His CRP number is coming down so it seems like the IV antibiotics they are giving him every day must be working on his inflamation. So, all in all he's doing well and is headed in the right direction.

We were talking about going to the movies this afternoon but he has a headache that he can't quite shake so he's bundled up on the couch right now after taking some Darvon. Hopefully they will kick in pretty soon and he will start feeling better.

I warmed up some of the vegetable beef soup that I made the other day and we had it for lunch before we went to the hospital. That's been five hours ago and Tanner still says he's not hungry so he must not feel well! His appetite is one thing that hasn't been much affected by all these treatments.

I think our Aunt Tincey who lives here in Benton is going to try and come and see us some time this weekend. With Tanner's WBC so low right now, the doctor doesn't want him around small children so we haven't been able to go to her house to see her, Julie (my cousin), and her grandkids. It will be nice to get to see her again before we head home for our break.

Maybe if Tanner's feeling up to it, we can take in a movie later this weekend. Until his WBC rises, he would have to wear a mask so I guess we will just see how it goes. When he's having a good day, he just gets anxious to get out and do something and I have to remind him that he still doesn't have an immune system. In the meantime, I guess I'll go and rent something for us to watch tonight.

Every teenager's dream Friday night. Watching videos with his mom!

Thursday, September 10, 2009

Well Granny Jane is gone and Tanner and I are alone again. I nearly cried when she got in her truck and drove away this morning. I know that I'm kind of the loner sort and usually enjoy time to myself - but these weeks of being away from our loved ones in Texas is beginning to take a toll. Tanner and I both are ready to come home for a while.

It will be nice to see our family and friends. I miss Sunday dinner at Aunt Gerry's house. I miss my grandchildren, my nieces and nephews (and great nieces and nephews), I miss all my loved ones, and heck, I even miss work!

We had a quiet day today and Tanner feels pretty good. He has a little inflamation that is causing him some discomfort and they gave him another bag of IV antibiotics. His potassium is low so he has a potassium drip attached to his line that should run out around 10 p.m. tonight - right on schedule for my bedtime.

We were assigned to be in the same room today as our new friends, John and Lauren, and it was nice to have a chance to visit with them for an extended time. John's treatment has coincided pretty close to Tanner's since we have been here and they should get to go home to Virginia for a while about the same time we get to come back to Fort Worth.

We also saw Anastasia and Harris, a young couple from Greece, who have been here since Tanner arrived. They were actually in our orientation class our first week here in Arkansas. Anastasia was telling us that their insurance wouldn't cover her husband's treatment unless he was an inpatient so he was in the hospital for a month. They were telling Tanner that when all of this is done, he should come to Greece for dancing and celebration. Who knows, maybe one day he can go!
Everyone gathered in our room today at the hospital and were all catching up with each other. The nurses were saying that our's was the "fun" room because there was much laughter and chatter going on!

It's interesting (and reassuring) to talk to the other patients and caregivers who have been here undergoing basically the same treatment at the same time. Everyone is very interested to hear how everyone else is doing and it seems like they are all coming up on their "break" time at about the same pace.

We have also met another couple by the name of Tom and Shirley who are from Oklahoma. They are renting an apartment across from us and when I told them that Tanner was about to be released to go home for 3 or 4 weeks, Tom said he was going to tell Dr. Barlogie not to let him leave because he wanted him here for the company. Tanner thought that was pretty funny!

We have met some wonderful people while we have been here in Arkansas and I will never forget them. Tanner is so much younger than most of the other patients, but they have all taken him under their wings. He enjoys visiting with them all so very much and has handled this whole process with grace and patience. If I had been the one sick and undergoing treatment, I don't know if I could have handled things half as well as Tanner has. He's a very special young man (I started to say boy but I don't know that I would call Tanner a boy anymore) and I now see him in a whole new light.

Wednesday, September 9, 2009

It has been another long day of about five hours at the hospital. You leave in the morning and hope that you are only going to be there a couple of hours for labwork and when you get there most times you find that it's going to be hours.

Tonight is one of those nights that I am totally exhausted. I know that Tanner's exhausted too because he and I have arrived at the point that we have snapped at each other this evening. I'm sure it will be all better tomorrow after we get a good night's rest.

We were telling the nurse today that Dr. Barlogie said Tanner should be able to go home in about a week if his platelets reach 50 (on their own without a transfusion). She said that Tanner's platelets won't come up until they quit giving him his his growth factor shots and they won't quit the shots until his white blood count (WBC) rises to a 2 or above and stays there for two days. Unfortunately his WBC went down from a .05 yesterday to a .04 today so right now he's headed in the wrong direction. The nurse explained to us that these three days will be his lowest so I guess he will have some more rough days to get through before we get to go home.

They had to give him more platelets today so his number will be higher tomorrow but we can't even consider his platelet count until we get the white blood count above two. They gave him pre-meds before his platelet transfusion today but he still had another allergic reaction and had to be given high doses of Benadryl and steroids before we could come back to the apartment.

When his labwork results came back today his "CRP" was high which indicates that he has an infection or inflamation so they gave him an antibiotic IV drip also. He hasn't had a lot of energy or been in the best of moods today so maybe he had something happening that the antibiotics will help out with.

Granny Jane is still here with us and we have been talking to lots of people about the insurance and the fact that they are indiscriminately denying coverage for everything turned in for Tanner since we've arrived in Arkansas. I mean they denied coverage as "experimental" for the orthopedic doctor here in Arkansas who has been seeing Tanner for his broken leg. X-rays showed that his bone wasn't healing correctly and the orthopedic doctor had to put him in a new cast and his treatment was deemed ineligible because treatment was experimental. How crazy is that?

They have just absolutely turned down all claims to date (x-rays, scans, MRI's, doctor's, etc...) as ineligible because they consider his treatment experimental. I don't think they are even looking at the claims at this point. EVERYTHING is experimental.

The doctor's in Fort Worth sent us to Arkansas for treatment because they didn't know how to treat Tanner since, as they explained to me, it is so very rare that Multiple Myeloma hits a teenager. They said that his cancer was so widespread that he would need the most aggressive cutting edge treatment available to try and achieve a cure. They knew that his best chance of obtaining that cutting edge treatment was in Little Rock. What the insurance hasn't been able to grasp so far is that cutting edge is not synonymous with experimental.

I worked for a surgeon for eleven years filing insurance and I know that many insurance companies just automatically deny major claims hoping that the patient will just accept that decision and the claims will be dropped. They are seriously mistaken if they think that I will allow that to happen with Tanner's claims.

I spoke with our Case Manager with the insurance company today and she said that she has been trying to get documentation from Dr. Barlogie's office regarding the treatment so that an appeal can be filed but that the doctor's office hasn't been forthcoming with the required information.

This afternoon Granny Jane stayed with Tanner while he was getting his IV's and I went to the doctor's office and spoke with the insurance lady. Her desk was covered with materials she has been gathering to send to the insurance company. At this point, the doctors office is about to turn in the information necessary to file an appeal for the denial and we will see what the insurance company has to say. If they still deny, I have the forms already gathered to file a complaint with the Department of Insurance.

From what I gather from Sandra at the doctor's office, the insurance keeps denying coverage because they say Tanner is undergoing treatment in a "protocol" (research). In actuality, he is not participating in a protocol - and in fact because he is a minor, is not allowed to participate in research treatment.

Hopefully, the pages and pages of literature that Sandra has gathered to send to the insurance company verifying that they have successfully been providing this treatment to patients and affecting a cure for a number of years will be sufficient to change the denial to acceptance. I mean at what point does "experimental" change to established treatment? How many years does it take? If they still deny, I will be using that literature to file a complaint with the DOI.

Luckily, Dr. Barlogie doesn't deny treatment just because the insurance company denies coverage and Tanner is well on his way to remission.

Granny Jane leaves in the morning so it will be just the two of us again. We will both miss her and have really enjoyed having her with us!

Tuesday, September 8, 2009

Good news today! Dr. Barlogie says that Tanner should be able to come home soon!! Oh boy, oh boy, oh boy!!!!

As you can imagine, we have sometimes felt isolated up here in Arkansas with most of our loved ones in Texas and the thought of being able to come home for a while is pretty uplifting (to put it mildly)!!

When the PA came in to see us today, he asked how Tanner did during this round of chemo and was very surprised to hear that he didn't get as sick this time around as he did during the first round of chemotherapy. He said this treatment of chemo was the most aggressive form and he couldn't believe how well Tanner did. Dr. Barlogie was suprised to hear how well he did too but he said he could believe it because Tanner is a "youngster".

He looked over all the lab reports and said that Tanner is doing very well and that we should be able to go home in about a week. Needless to say, I got a little teary and Granny Jane and Tanner got pretty excited. Actually going home is something I've not allowed myself to dwell on much these last few weeks. I've tried to just focus on Tanner's treatment and have functioned by just living in the moment. The thought that my baby has improved enough that Dr. Barlogie uses words like "in remission" and "go home" brings me to tears. I've been waiting to hear those words but have barely hoped that they would come this early in his treatment.

Before he left the exam room, Dr. Barlogie qualifed his statement about going home in a week with the requirement that Tanner's platelet count has to reach 50 - and that he has to reach it on his own and not with another platelet transfusion.

Yesterday his platelet count was 9 and today it was 25 but I know that it only jumped to that number because of the transfusion that he received yesterday. It will be interesting to see what the number is tomorrow and for the rest of the week. Believe me, Tanner and I both will be watching that number anxiously every day now.

I asked the doctor what happens when we come back after going home for three to four weeks and he told me he would see us next week and we will talk more about what is going to happen then. From what I gather from the other patients, after the stem cell transplant and recovering from being neutropenic, he allows the patients to go home for a few weeks and then when they come back he runs all the tests again. Once he gets the results of those tests, he will decide how to continue their treatment. But as I've said, that's just speculating based on what I've heard from some of the other patients.

Tanner is so excited about getting to go home for a while. He says the first thing he wants to do is see his family. Get ready everyone, we will be home soon!

Monday, September 7, 2009

It was another long day with five hours spent at the hospital. Exhausting...

Tanner is close to bottoming out with low red blood count, white blood count, and platelets. Yesterday they decided that he would need a platelet transfusion but that he would need to be cross matched and therefore would have to wait a day on the platelets so they could get them special delivered. The nurse explained to us that most people can just take any platelets but that something in Tanner's antibodies had indicated that he would have to be cross matched for matched platelets.

We went in at 11:00 a.m. this morning and had Tanner's labwork done and a bag of fluids and then they hung the bag of platelets and told us it would take about twenty minutes for them to run out.

When everything finished and they were about to give him his growth factor shot, Tanner's eyes started swelling and a rash was spreading across his body. They had to call in the PA and she said he was having an allergic reaction to the platelets and they had to give him some IV Benadryl and hydrocortisone. We had to wait several hours while they monitored him and waited on the medications to help with the allergic reaction.

The nurse said if Tanner ever requires another platelet transfusion, we would always have to remember to tell them that he had to be cross-matched and also given pre-medications. He is a lot better but his eyes are still slightly swollen so I'm going to give him some more Benadryl before he goes to bed.

He's doing very well as far as nausea and mouth sores (none so far - yea!) are concerned. He's just really weak and easily runs out of energy.

He has a very good appetite and just finished a bowl of fruit salad with cantalope, plum, apple, and peaches (all peeled so that he won't pick up any "bugs" from the outside of the fruit) and is now asking me for the cucumbers and onions I put together for him last night. His Granny Jane just asked him if he was asking for heartburn. Hah! Now if I could just get him to drink like he should!!

We go and see Dr. Barlogie tomorrow afternoon at 3:00 p.m. Hopefully the trip to the Infusion Clinic will go a little quicker than it has the last two days so we will be able to make the appointment on time.

Granny Jane is looking forward to meeting Dr. Barlogie and I'm anxious, as always, to hear what he has to say.

Sunday, September 6, 2009

It's been a long - long day at the hospital. Tanner's very neutropenic and his platelets and white blood count is really low so they have been giving him lots of drips today. We are still at the hospital and it's been five hours so far.

I don't know why it is so tiring sitting at the hospital but I've found that being here for hours on end is just exhausting. It's somehow very different than sitting five hours at the apartment.

He's pretty weak but all in all still fairly good. The nurse told us that with his platelet count being so low, he really needs to take it easy and not do anything that might make him bleed. Even when brushing his teeth he needs to be careful not to brush hard enough for the gums to start bleeding.

We are all starving and went down to the hospital cafeteria to see what they had to eat and let me just say that we have decided that the hospital cafeteria is not the place to acquire food on a Sunday afternoon.

I think they are about to let us go so I will wrap up for now and we are going to find some food to pick up and take to the apartment.

Saturday, September 5, 2009

Tanner had a really good day today with no nausea or exhaustion - but the nurse said he's very neutropenic now so he has to wear the mask when he is going to be around other people. This is to be expected and we know he has to bottom out and climb back up before he can truly be on the road to recovery.

His platelet count has also dropped a lot so tomorrow when we go for his labwork and the growth factor shot, they will have to give him extra drips. They told us to be prepared to be there for a few hours.

We have made friends with this couple by the name of John and Lauren and when they put us in a room to wait on the results of Tanner's labwork, he told the nurse he wanted to go over to their room to say something to them and she told him that would be fine. The next thing I knew, Tanner was back telling me to follow him and we ended up waiting in their room.

When Tanner left their room for a few minutes to go and get a mask, I told them that if we were interrupting, or if John wanted to rest, I could take Tanner back to the room he had been assigned to and they told me no and went on to say how much they were enjoying visiting with him and how very personable he was.

He spends so much time with just me, that when we go to the hospital, he really enjoys getting to talk to some of the other patients.

His Granny Jane has come up to Arkansas to spend a few days with us and Tanner immediately wanted to go to On The Border for mexican food. We had dinner on the patio (so Tanner could be outside away from all the other people since he doens't have an immune system right now) and it was really pleasant outside.

He's already settled into the recliner and has just put in "Gods and Generals" to watch on TV so I think we are settled in for the night.
By the way, it's candy wrapped in front of Tanner's teeth in the pictures...

Friday, September 4, 2009

Tanner didn't feel as well today as he did yesterday. He had a couple of times that he got really dizzy and weak. When we finally got to the Infusion Clinic at the hospital this afternoon, they said he was definitely neutropenic now. They gave us a list of foods he can eat to help out and told him he needs to drink lots of fluids.

We stopped at the grocery store on the way back to the apartment and bought lots of fruit to help bring up his potassium level. So far he has had a grapefruit, two oranges, and some grapes - and he's probably not through before he goes to bed tonight. That boy has always loved fruit!

We went to have Tanner's left tibia and right femur x-rayed first thing this morning and then went to the orthopedic surgeon's office so they could look them over before he went to have a new cast put on his left leg.

When they pulled up the x-ray of the left tibia taken today and compared it to the x-ray from a month ago, it actually looked like the bone edges from the fracure might have shifted a little further apart. The doctor said that Tanner wasn't ready yet for a cast below the knee and needed to go back into a full leg cast.

He called in one of his interns and told him when we went down to have the new cast put on, he wanted him to go down and put pressure on the spot where the break is so that they can try to make the new cast fit more snuggly in the area of the fracture.

When we went to have the cast put on, the resident doctor came down and helped put pressure on the area where the break is while they were casting him and it hurt so bad that Tanner was in tears and got really pale and weak again. They had to hold his leg up in the air, pull on his toes, and put pressure on the bone and it was all just a very painful process for him to endure.

Now, after some time has passed, he says the leg actually feels better in the new cast because it seems like it has more support. The cast is just a little shorter in the thigh area than the old one and is quite a bit less bulky. Tanner says it feels much lighter.

The young man who put the new cast on said the only reason he made it less bulky and a little shorter is because Tanner is having to use the wheelchair and has to remain fairly inactive. He said if he was going to be up and around a lot, he would have had to put on one of the bulkier - longer casts.

I think the biggest reason he was so disappointed to be put back in a long cast is because he knows that I won't let him drive as long as a full leg cast is on his leg. He keeps telling me he can still drive when we get home but I just don't think it would be safe to drive in a full cast - even though it's on his left leg.

The orthopedic surgeon said the right femur still looks very fragile so he wants Tanner to continue using the wheelchair as much as possible and for us to come back and see him again in two months.

While we were in the radiology waiting room, we were snapping some pictures of ourselves on my phone to text to my cousin in Fort Worth and were laughing and teasing each other and when they took Tanner back for his x-ray a couple who were also waiting asked me what was wrong with him.

We did the usual waiting room discussions where they told us what had happened to them (the man had bone cancer and his right arm had to be amputated) and I explained to them about what had happened to Tanner.

When the radiologist brought Tanner back out, the lady I had been talking to came over and told me her husband was "captain" of a charity bingo hall in their hometown and they wanted to give us something. She handed me $200 - and she and I both started crying.

I am continually surprised and touched by the generosity of the people we have met in the waiting rooms here in Arkansas. There have been so many people who have reached out to us with love and compasssion; friends, family, and complete strangers.
No matter what, I know that Tanner and I are both changed forever from this experience. I hope to someday pass on some of the generosity we have experienced to someone else in need.

Thursday, September 3, 2009

Tanner woke up feeling good today. We didn't have to set an alarm and go to the hospital first thing in the morning but instead got to go in at 1:00 p.m. Since he went to bed last night at 9:00 p.m. he didn't sleep too late, but rather was up by 8:00 a.m. and was able to eat and take his time getting ready. Today they did his labwork and gave him a growth factor shot and said so far everything looks the way it should.

His white cell count is on the way down and has gone from an 11 yesterday to a 4 today. He will most likely be neutropenic tomorrow and will have to start wearing the mask again - though you wouldn't know that by looking at him.

He is feeling pretty good and by the time we left the hospital, he was really hungry. He decided that he wanted to use the Olive Garden gift card his Aunt Traci and Uncle Rick sent him and boy did that kid eat! He even had a dessert!! I told him he was the only one I knew who would probably come through cancer treatment having gained weight! He can afford to put on some weigh though. Before all of this started, he weighed 165 pounds and this morning he weighed 145 so I guess he can have all the desserts he wants.

He was pretty worn out by the time we got through eating and is now ensconced on the couch. I have a feeling that is where he is going to finish out the day.

We saw John and Loren, friends we have made while we have been here in Little Rock. John is seven days post transplant and he said today has been his worse day so far and that he just feels completely exhausted.

I know that Tanner is feeling really good right now, but I keep worrying that he might have some bad days in front of him. Then again, he is so young and "healthy" maybe he will breeze through his remaining days of recovery. A mom can only hope so!

Tanner asked the nurse how long he has to continue to take the growth factor shots and she told him that depended on how long he stays neutropenic. At this point the shots will help him produce the white cells needed to assist bringing him out of neutropenia once he bottoms out.

So far, Tanner has done really well recovering from this round of chemo and the stem cell transplant. Hopefully he will have a good weekend!

Wednesday, September 2, 2009

Tanner had his stem cell transplant today.

The transplant itself wasn't much. They just hung a small bag of his own stem cells and let it run into his body. The PA had to stand in the room and monitor the transplant - which in itself took less than ten minutes. We were at the hospital all together over five hours today.

There was a chemical kind of smell from the preservatives added to the stem cells. The nurses and PA kept telling us that it would smell like creamed corn. I can't say that I thought it smelled like corn but you could definitely smell some kind of chemicals. She said his body and breath would permeate the smell for a couple of days. They gave him lollipops to suck on during the drip because they said he would have a "funky" taste in his mouth.

Other than feeling really tired and nausteated, he hasn't been very sick this time around - at least not to the point of vomiting. This is a little surprising since this was a much more agressive round of chemo than the first time (when he got really sick). I think the doctor must have really changed up his medicine to to try and avoid the vomiting he had before.

He told me he felt sores in his mouth last night but said they were much better today. I don't know if that's going to be the extent of the sores - or if it's just wishful thinking on our parts. It would be so very nice if he doesn't get a bad case of the sores in his mouth and throat.

He doesn't have much energy at all and after just a little activity, he's wiped out. He's in pretty good spirits - though if looks had a punch he could have knocked me flat a few times. LOL! A little too much togetherness with his mom sometimes I think. He's not feeling well and there I am, hovering over him asking how he feels and trying to get him to drink. Sometimes he just snaps, though I can tell that for the most part, he really tries to control that.

I know that patients usually take out their frustrations on their caretaker so I don't let it get to me and, all in all, we are doing really well.

He didn't feel like stopping on the way back to the apartment and we came straight home so I need to go and see what he wants to eat (See? Hovering again) but I wanted to go ahead and update the blog since everyone knew the transplant was today.

Once again, thank everyone for your prayers, love and support. We love and miss you all!

Tuesday, September 1, 2009

Tanner had a really good day yesterday but is feeling pretty wiped out today.

We went to the hospital at 9:00 a.m. this morning only to be told that his stem cell transplant had been delayed from this morning to tomorrow morning because our doctor had not sent in the orders. I told the nurse that they had told me yesterday that they didn't want Tanner to go two days between his medications and the stem cell transplant and she just said the stem cell doctor said it would be okay. I told her the fact that they had told me yesterday that it would be on Tuesday instead of Wednesday because they didn't want him to go two days in between chemo meds and the transplant, and now are telling me that it was no big deal, did not foster a sense of confidence in me.

He had a really good day yesterday and we even washed his hair (or what's left of it). He can get absolutely no water on the dressing at his neck so he lies on his bed and hangs his head over the side and I put a tub on the floor. I support his head with one hand and wash with the other and use a squirt bottle to wet and rinse his head.

A lot more of his hair came out while we were washing and drying. He really wishes the rest of it would come on out. He doesn't like the "blotchy" look.

Today he has been nauseated (but no vomiting) and hasn't had any energy at all. He told me he's really tired of feeling this way and I told him to just hang in there for the next two weeks and he should have pulled out of it by then.

The PA told me today that he WILL get sores in his throat and mouth and hopefully, since he's so young and "healthy", he will have a milder case. She said that the sores should be the worse part of what is still in front of him before he recovers from this round of treatment.

He has asked me to thank Aunt Traci and Uncle Rick for the gift cards that he got today and he promises to take his mom out to eat when he's feeling a little better.

He also told me to tell Kirk that now that he is bald and looks older, he will be counting on going to a bar with him when he get's back home (LOL- inside joke).