Yeah that's right. Today was the day and it happened. She finally got the treatment that she so desperately needed. We have waited so long for this moment, and the funny thing it it only took about 40 secs. We did get a video and some pictures of it, but I'm going to have to post them tomorrow because I left the camera at the hospital and I'm at the Inn right now. Today was such a great day, very nerve racking mind you. Like always there's a story behind it all. The cells were scheduled to be ready around 1:30ish and we were just patiently waiting to see her doctor because that meant it was time. Well when we saw him at 1:30 he informed us that they have to do some testing on the cells before they give them back to Katlyn. The results were all done and they were just waiting for them to be printed out, and wouldn't you have it....the computer crashed. I couldn't believe it. I asked him if he was joking. Of course he wasn't joking and it would take about an hour more. I'm telling you, we were watching that clock like crazy. At 2:30 I started to get really nervous. I kept watching the window and saying "where are they. They should be back now. What's going on." After what seemed like forever (because at this moment I'm sure our lives were going in slow motion) the doctor appeared in the window waving a bag with a huge syringe in it. The cells had arrived.
So they came in and injected them in Katlyn's line. After they were done Katlyn even said "thank you." That is exactly what we were today. Very thankful. Finally. I don't think I could even come close to explaining how much today meant to us. This really is a start of a new life for Katlyn. Now instead of waiting for something to happen we can now wait for Katlyn to get better. I find that I'm thinking about home a lot lately and John never stops talking about it. Now I don't have to feel like crying every time I think about us going home or Katlyn living a normal life, being able to go outside or being able to kiss her. Now we can get excited about it because it's now going to happen. I'm not sure how long it's going to take for the counts to start going up but I have a feeling it's going to go great. It's now done and all we have to do is wait and look forward to the very close future we have. WOW!!!! Katlyn is going to love it. She is going to love life so much. She already does and her world right now is a little hospital room. She is just going to love it. I can't wait to see her smiling face when the wind blows through her hair, or to give her a kiss.
Speaking of kisses, Katlyn is now blowing kisses all the time. It is so cute. She does it at just the most appropriate times. I love it so much. We did have a very good day today. We decided that because today was a very big deal and we've been waiting for this day for so long, we would have a party. We partied all right. We had balloons, cake (courtesy of the NIH), presents, a party dress for Katlyn and lots and lots of smiles. It was so much fun. We only thought it was appropriate to have a huge celebration on the day that's marked, Katlyn's get better day.
I will post pictures and the video tomorrow just as soon as I possibly can.
Saturday, May 26, 2007
Thursday, May 24, 2007
Another Crazy Day
So Katlyn's chemo was supposed to start today and before I scare everyone, I just want to let you know it did, but it almost didn't. This morning Katlyn was supposed to start her chemo at 9 a.m. Well, 9 came and went. Her doctors were worried because Katlyn has been having very loose stools and they didn't want to administer chemo if she had an infection. They asked me a million questions about the stool. After some discussion they felt that there were many other reasons why Katlyn could have loose stool besides being sick. So they took some blood and checked to see if there was any inflammation in her body. I thought John and I were going to go crazy. The doctor said that everything is very time sensitive and if we couldn't do chemo today we would have to put her back on PEG ADA, wait three months and start all over (even the harvest would have to be done again). I'm telling you our stress level was running really high (that isn't even coming close to the right description of how we felt). We were scared.
So anyway, that test came back in a normal level so there was no inflammation in her body. They also checked her stool for a few things and that all came back fine. They tried to do a urinalysis put because of all the diaper cream and the fact that it was collected on cotton balls, the test came back inconclusive. Mind you Katlyn was taking a nap after only getting 4 hours of sleep through the night, so we were desperate to get what needed to be done done, but try to do it without waking her. If she would have woken, it was necessary we know.
So when the UA came back, the doctors decided that putting a bag on her wasn't worth it. It would just make her skin break down, and they already felt as though it was unlikely that Katlyn was sick (same as John and I). So the chemo was back on schedule.
It started a lot later than was planned but it's all done now. She did great. She didn't give any sign of feeling yucky or anything. Thank GOD!!!! So now we just wait until Saturday when her cells will be injected back in. We are so excited. Finally!!!! Katlyn is going to have a new start to her life. We are thrilled. So now we just have to be super careful about germs like we always are. And the chemo drug seems to be hurting her when she urinates, so we have to stay all over that. That should be all through with like 24 hours though.
So anyway, that test came back in a normal level so there was no inflammation in her body. They also checked her stool for a few things and that all came back fine. They tried to do a urinalysis put because of all the diaper cream and the fact that it was collected on cotton balls, the test came back inconclusive. Mind you Katlyn was taking a nap after only getting 4 hours of sleep through the night, so we were desperate to get what needed to be done done, but try to do it without waking her. If she would have woken, it was necessary we know.
So when the UA came back, the doctors decided that putting a bag on her wasn't worth it. It would just make her skin break down, and they already felt as though it was unlikely that Katlyn was sick (same as John and I). So the chemo was back on schedule.
It started a lot later than was planned but it's all done now. She did great. She didn't give any sign of feeling yucky or anything. Thank GOD!!!! So now we just wait until Saturday when her cells will be injected back in. We are so excited. Finally!!!! Katlyn is going to have a new start to her life. We are thrilled. So now we just have to be super careful about germs like we always are. And the chemo drug seems to be hurting her when she urinates, so we have to stay all over that. That should be all through with like 24 hours though.
Monday, May 21, 2007
What a Day
I'd like to first off start by saying that Katlyn is okay. She is doing very well. What a day is right. We started off this morning not really knowing for sure if anything was going to happen or not. I think Johnathan and I held ourselves back because we were so scared to be let down again, which we have so many times. I think we asked everyone we saw if we were still okay. So anyway we brought Katlyn down to special procedure where she was scheduled to get her line put in. The doctor showed us what Katlyn's new line would be. I'm not sure the name of it but I know that it is a very new line. Apparently within six weeks Katlyn's tissue will grow around this little cuff inside, down the line a bit. That's great because it means things will be sealed off, so there's a lot less risk of infection. It's a lot like her other line except the lines are a lot short on the outside, which is a plus when those stubby little fingers what nothing better than to get a hold of the. I also must mention the line is also very pretty, as far as lines go. It's a double tunneled catheter and need I mention the reason I think it's so pretty is because it's purple and red. Yeah purple and red.
So the had to put Katlyn asleep so they first gave her an oral anesthetic which just relaxed her. Next we had to choose who would go in the room for Katlyn to go to sleep and John picked me because he was through it the last time and it still bothers him. I went in the room with her where they gave her a mask and she freaked out a little bit, but it was nothing like what John had described to me. I think I attribute that to the anesthesiologist. She was fantastic. She was signing Old McDonald Had a Farm to Katlyn and she fell asleep. She also kept reassuring me that everything I was seeing was perfectly normal, and then we were off to wonder what if anything would happen after the line was put in. Everyone kept coming in the room and telling us things were still a go ahead, but I really had a hard time to believe anyone. We were taking a walk because the line procedure was going to take an hour and a half and just our luck their was a code red on the 7th floor. I looked at John and I know we were thinking the same thing. Can you imagine the building getting evacuated at a time like this? Geez. The things that we have gone through to get here, it's a wonder it didn't happen. All was clear though and the code was off so we could stop holding our breathes, but just barely.
So the line was a success so the next stop was the OR. I was still waiting for someone to cancel on us or something weird to happen. We were sitting in the waiting room and the doctor that had been sick on Friday came and met with us. He was perfectly fine today and he told us that if it was any other patient he would have done the procedure, but because of Katlyn's condition, he wanted to especially careful. We let him know just how thankful we were. So he explained to us what was going to happen. I know I was still not letting myself get excited. So the came out several times throughout the procedure and it wasn't until everything was done that Johnathan and I allowed ourselves to get really excited. I mean really happy. Finally.
There was no problems or complications throughout the procedure. So the next thing we had to wonder was if there was enough cell collected. In total they took 200ml of Katlyn's bone marrow. They needed a special type of cell called CD34+. These cells are special because they can basically serve any purpose. They can transform themselves into any type, meaning they can carry and hold the ADA enzyme. Hey, I'm not a scientist. I have no idea if that made any sense, but that's how I understand it. SO the needed to collect I believe the doctor said 16 million of these cells. Well this evening they confirmed for us that things look good and they collected more than enough cell, about 44 million. YEAH!!!!!
So tonight we had to take some blood from Katlyn to see where her hemoglobin was at. She had been 14 as of Friday and since the procedure has dropped to 8.4. There was some talk about doing a blood transfusion but her doctors have decided to hold off and monitor her closely. They believe she'll come back up on her own and the risks right now outweigh the benefits. They don't think that a transfusion at this time will have any benefit. If Katlyn should drop below 7 then we would do a transfusion. But she'd not going to!!!!!! I can feel it.
So our girl is doing very well. I have a video of her walking in a very drunkenly manner. Haha!!! She insisted on walking and as stubborn as she is I know she was going to get her way. I'll post it tomorrow. For now I got to go to bed because I'm so beat. This day has been so long.....but great at the same time. So Katlyn will get 3 doses of an anti-seizure medicine just as a precaution for the chemo, which is standard. Then on Wednesday she'll get 2 rounds of very mild chemo 6 hours apart. Don't worry I will post as soon as I get a chance.
So the had to put Katlyn asleep so they first gave her an oral anesthetic which just relaxed her. Next we had to choose who would go in the room for Katlyn to go to sleep and John picked me because he was through it the last time and it still bothers him. I went in the room with her where they gave her a mask and she freaked out a little bit, but it was nothing like what John had described to me. I think I attribute that to the anesthesiologist. She was fantastic. She was signing Old McDonald Had a Farm to Katlyn and she fell asleep. She also kept reassuring me that everything I was seeing was perfectly normal, and then we were off to wonder what if anything would happen after the line was put in. Everyone kept coming in the room and telling us things were still a go ahead, but I really had a hard time to believe anyone. We were taking a walk because the line procedure was going to take an hour and a half and just our luck their was a code red on the 7th floor. I looked at John and I know we were thinking the same thing. Can you imagine the building getting evacuated at a time like this? Geez. The things that we have gone through to get here, it's a wonder it didn't happen. All was clear though and the code was off so we could stop holding our breathes, but just barely.
So the line was a success so the next stop was the OR. I was still waiting for someone to cancel on us or something weird to happen. We were sitting in the waiting room and the doctor that had been sick on Friday came and met with us. He was perfectly fine today and he told us that if it was any other patient he would have done the procedure, but because of Katlyn's condition, he wanted to especially careful. We let him know just how thankful we were. So he explained to us what was going to happen. I know I was still not letting myself get excited. So the came out several times throughout the procedure and it wasn't until everything was done that Johnathan and I allowed ourselves to get really excited. I mean really happy. Finally.
There was no problems or complications throughout the procedure. So the next thing we had to wonder was if there was enough cell collected. In total they took 200ml of Katlyn's bone marrow. They needed a special type of cell called CD34+. These cells are special because they can basically serve any purpose. They can transform themselves into any type, meaning they can carry and hold the ADA enzyme. Hey, I'm not a scientist. I have no idea if that made any sense, but that's how I understand it. SO the needed to collect I believe the doctor said 16 million of these cells. Well this evening they confirmed for us that things look good and they collected more than enough cell, about 44 million. YEAH!!!!!
So tonight we had to take some blood from Katlyn to see where her hemoglobin was at. She had been 14 as of Friday and since the procedure has dropped to 8.4. There was some talk about doing a blood transfusion but her doctors have decided to hold off and monitor her closely. They believe she'll come back up on her own and the risks right now outweigh the benefits. They don't think that a transfusion at this time will have any benefit. If Katlyn should drop below 7 then we would do a transfusion. But she'd not going to!!!!!! I can feel it.
So our girl is doing very well. I have a video of her walking in a very drunkenly manner. Haha!!! She insisted on walking and as stubborn as she is I know she was going to get her way. I'll post it tomorrow. For now I got to go to bed because I'm so beat. This day has been so long.....but great at the same time. So Katlyn will get 3 doses of an anti-seizure medicine just as a precaution for the chemo, which is standard. Then on Wednesday she'll get 2 rounds of very mild chemo 6 hours apart. Don't worry I will post as soon as I get a chance.
Friday, May 18, 2007
So I just wanted to let everyone know that unfortunately the procedure was not able to be done today. It has been postponed. One of the hematologists was sick this morning and didn't want to risk Katlyn getting sick, which we do appreciate. At the minute they tried to contact another doctor, but were unable to get the procedure done today. The good thing is though, Katlyn is not the one sick. If that doctor would have worked with Katlyn and she got sick, we'd have bigger problems. The harvest is rescheduled for Monday.
Which isn't really that bad. If you could have seen the three of us today, like zombies running around the hospital room, you'd understand. This way, we will be able to get her rested again. I'm telling you though, when the doctor came to talk to us this morning and said he had bad news, I swear my heart stopped beating. I had no idea what it could be, but I didn't think it was something like this. At first we were really let down, but we're okay. After a few minutes, we realized that it was for the best anyways. We really can't have Katlyn sick.
We're all great though. I actually found a McDonald's here today and a grocery store yesterday. Some places here are so expensive and when you find one with a little break, it's exciting. Besides, I haven't had McDonald's in ages. I actually went across the NIH campus to the Naval Hospital. Their base has a McDonald's unbeknownst to be. Ha ha!!! It wasn't that far away at all. Katlyn is great though. John and I were actually just discussing how Katlyn doesn't even have a runny nose anymore. It has all was run, but sometime lately, it just stopped.
Which isn't really that bad. If you could have seen the three of us today, like zombies running around the hospital room, you'd understand. This way, we will be able to get her rested again. I'm telling you though, when the doctor came to talk to us this morning and said he had bad news, I swear my heart stopped beating. I had no idea what it could be, but I didn't think it was something like this. At first we were really let down, but we're okay. After a few minutes, we realized that it was for the best anyways. We really can't have Katlyn sick.
We're all great though. I actually found a McDonald's here today and a grocery store yesterday. Some places here are so expensive and when you find one with a little break, it's exciting. Besides, I haven't had McDonald's in ages. I actually went across the NIH campus to the Naval Hospital. Their base has a McDonald's unbeknownst to be. Ha ha!!! It wasn't that far away at all. Katlyn is great though. John and I were actually just discussing how Katlyn doesn't even have a runny nose anymore. It has all was run, but sometime lately, it just stopped.
I have been trying my hardest to get on here and write for everyone following Katlyn, but it seems as though a lot has been stopping me. The computer in her room isn't working so it makes it so difficult. Right now I am writing at light 5 a.m. Katlyn can't eat anything and she just happened to waked up just after her deadline to eat. Well it took me until now to get her back to sleep. I don't dare go in her room as I may wake her up, so I'm in the playroom just down the hall. The way I see it is if I'm tired...well so what, but if Katlyn is tired that's not fair plus she will only feel hungry.
So the big day is today. We did have a couple of tests left to get done before we knew for sure if we were going to go through with the harvest tomorrow. Her neautrophils were one of the,. We were so nervous. I just couldn't take it. So her blood work was done yesterday after waiting for what seemed like forever for someone to come and draw blood. Well when they did come they got what they needed in one poke. YEAH!!!! Anyway, late afternoon yesterday the doctors came to us to let us know that her neautrophils were 2200, despite being off the PEG ADA. I can't even put into words how relieved we were. That's all. She's ready.
So at 7:30 today Katlyn will go down to get her central line put in and her bone marrow harvested. Finally. She will be asleep for the entire ordeal, and we should be back in her room around 10:30isher...Haha!!! There will be three doctors doing the harvest. I guess it's a lot of work. The have to be able to drill many holes of bone marrow without removing the needle from her skin, so they will take turns. She will have it drawn out of both hips and she will have 5ml/kilo taken. She's 13 kilos, so that works out to be 65ml of bone marrow. Katlyn may be in some discomfort because of the amount of hole in her hips, but we're not even expecting that. She's a tough little girl. We are prepared, we just wouldn't be surprised if she was running around as soon as the drowsiness goes away.
So then they will take Katlyn's bone marrow to the lab, where it will be exposed to the manufactured viruses (with the ada enzyme in them). So on Sunday, Katlyn will get two rounds of Chemotherapy, six hours apart. Katlyn should not lose her hair or feel really sick. It's such a low dose that we're not expecting all those horrible symptoms. The doctor said she may get a little drowsy and upset stomach for the day, but only because of the med and the high volume of blood that will be taken. Then on Wednesday she will get the cells back and it's just a waiting game from there. I'm just glad the waiting game isn't going to be to get her treatment anymore. This time it's going to be to really get her home. YEAH!!!!!
She is doing great though. She has perfected walking so much that she now also walks backwards. She also says "thank you" consistently with us handing her stuff. She is such a doll. We really love her so much and just can't wait to get her better. It's really going to happen and Katlyn is going to do great.
Oh yeah the interview with CBC, Jenn and I can be found at this link. Please check it out. I can't because I'm on a Macintosh and it just won't work. I'll have to wait to get to the Inn, but I'm sure it's great.
http://www.cbc.ca/informationmorningns/interviews.html
So the big day is today. We did have a couple of tests left to get done before we knew for sure if we were going to go through with the harvest tomorrow. Her neautrophils were one of the,. We were so nervous. I just couldn't take it. So her blood work was done yesterday after waiting for what seemed like forever for someone to come and draw blood. Well when they did come they got what they needed in one poke. YEAH!!!! Anyway, late afternoon yesterday the doctors came to us to let us know that her neautrophils were 2200, despite being off the PEG ADA. I can't even put into words how relieved we were. That's all. She's ready.
So at 7:30 today Katlyn will go down to get her central line put in and her bone marrow harvested. Finally. She will be asleep for the entire ordeal, and we should be back in her room around 10:30isher...Haha!!! There will be three doctors doing the harvest. I guess it's a lot of work. The have to be able to drill many holes of bone marrow without removing the needle from her skin, so they will take turns. She will have it drawn out of both hips and she will have 5ml/kilo taken. She's 13 kilos, so that works out to be 65ml of bone marrow. Katlyn may be in some discomfort because of the amount of hole in her hips, but we're not even expecting that. She's a tough little girl. We are prepared, we just wouldn't be surprised if she was running around as soon as the drowsiness goes away.
So then they will take Katlyn's bone marrow to the lab, where it will be exposed to the manufactured viruses (with the ada enzyme in them). So on Sunday, Katlyn will get two rounds of Chemotherapy, six hours apart. Katlyn should not lose her hair or feel really sick. It's such a low dose that we're not expecting all those horrible symptoms. The doctor said she may get a little drowsy and upset stomach for the day, but only because of the med and the high volume of blood that will be taken. Then on Wednesday she will get the cells back and it's just a waiting game from there. I'm just glad the waiting game isn't going to be to get her treatment anymore. This time it's going to be to really get her home. YEAH!!!!!
She is doing great though. She has perfected walking so much that she now also walks backwards. She also says "thank you" consistently with us handing her stuff. She is such a doll. We really love her so much and just can't wait to get her better. It's really going to happen and Katlyn is going to do great.
Oh yeah the interview with CBC, Jenn and I can be found at this link. Please check it out. I can't because I'm on a Macintosh and it just won't work. I'll have to wait to get to the Inn, but I'm sure it's great.
http://www.cbc.ca/informationmorningns/interviews.html
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