Friday, August 29, 2014
Day +29 So much great news to report today. Kaltyns neutrophils are at 900 today which means that she has been above 500 long enough to no longer be neutrophenic and we can finally ditch the gowns and masks. Yup that's right. We've been able to give our girl some real smooches today. The doctor was telling Katlyn this morning that he was very proud and impressed with all of her hard work. She has been going outside for short trips, although she does wear a mask because there is construction in the area and we don't want her to get a fungal infection. Over the last couple of days they have started to give Katlyn magnesium by mouth and reduced her hydration, so that she no longer has to be hooked up by IV. So there is no more lugging her pole around except for her IVIG infusions which are a few hours once a week. Next week, as long as Katlyn's neutrophils are to 1000, they are going to perform a test called chimerism. This blood test will tell us how many of those beautiful cells are donor cells. We hope and pray for 100% donor cells. This would confirm engraftment and so far a successful transplant. They have also switched cyclosporin for tacrolimus. This is great news for Katlyn because the cyclosporine was 9 pills in the am and 9 in the pm. With this new med, so far it's 2 tiny pills in the am and two in the pm. So with all the being said, if Katlyn progress keeps in this same direction, it looks like we will be headed home soon. Potentially as early as next week. We will have many precautions to keep Katlyn safe, but she will be in the comfort of her own home. She will eat and sleep better and I just know she will be happier there. She will have many followup appointments at both at the IWK and the DECH. She has an amazing team of doctors that have brought her this far, and I just know she is going to be in good hands. Thank you all for your continued prayers and support!!!
Tuesday, August 26, 2014
Day +26 I honestly cannot even imagine being happier than I am right now. Funny thing is, as Katlyn's cells grow we are just going to be happier and happier. Katlyn got woken up this morning very early because they need her to take her MMF every 8 hours for some bloodwork to make sure she is getting proper dosage for her immune suppressants. Waking Katlyn up so early was kind of harsh for a little girl who is so tired, but the nurse decided to soften the blow by showing us Katlyn's bloodwork. She has already reached 700 neutrophils and 200 lymphocytes. We immediately called dad. Her platelets are now in the normal range as well, and we are just waiting for the hemoglobin to come up too (it will). So one more day of neutrophils and we can ditch the gowns, and masks!! I will be able to finally give my babes a kiss again. They are also removing the rest of Katlyn's hydration today . This means that she will only have one line giving her magnesium. She no longer has any medications running through it either. Very soon she will not need to be hooked up at all!! Her magnesium levels are low, but not danger low. They are trying to maintain a good level with a drug that holds the magnesium in Katlyn's body longer. They could just give her magnesium by mouth, but it causes diarrhea Because Katlyn has norovirus and problems already, we don't want to make that situation worse. Eventually Katlyn's lymphocytes will be able to fight off the norovirus, but not yet. With immune suppressants we will, in about 5 more months time, slowly turn her immune system on. Right now we are suppressing it so that it can adapt to its new environment and protect Katlyn, rather than fight against her. This immune suppressant is used to prevent graft versus host disease or gvhd. Today is a great day!! Thanks so much to everyone for your continued prayers and support. Keep it coming!!!!
Saturday, August 23, 2014
Day +23 is a great day!! Katlyn woke up this morning feeling sleepy, but not nauseous. She quickly got some breakfast in and then proceeded to take 12 pills. She barely complained about taking them at all. She had a morning snack and lunch was a success. Her tastes buds are back so things are starting to be delicious again. Nothing sweeter for us right now than hearing our baby girl say "I'm hungry" or "I feel great." You can see it. There is more life to her and she is all smiley. What a blessing!!! She has hardly said much about her stomach today, so here's hoping the nausea is going away. The doctor has continued to take her off the IV meds and starting tomorrow we will start to pull back the hydration. Johnathan had a great idea to have the nurse write down all of Katlyn's meds and try to rearrange some to make it easier for Katlyn. Cyclosporin alone is 8 pills and MMF is another 2. These two pills have to be taken at then same times everyday and are super important in preventing gvhd. So here we are trying to get 12 pills into her and then she has her regular pills as well. We looked at what she has and shuffled it around a bit so that she can focus on just those and the other meds are throughout the day. Trust me when I say, she is one full girl after 12 pills. Also, Katlyn has been taking allegra for quite awhile not because she was breaking out in hives all of the time for some unknown reason. The allegra prevented Katlyn from breaking out in hives at all. We asked the doctor if we could try taking this away since she has done so well for so long, and we are in a safe place to do this. He agreed that is would be a good idea. Any allergies that Katlyn used to have may be different now anyway since she has a brand new immune system. Speaking of her immune stem. All is looking great. Every morning is so exciting for us. If the numbers stay the same than its just confirmation that all is well, and if anything goes up then it CHRISTMAS!!! Her neutrophils today were 200, lymphocytes 100, and the platelets and hemoglobin continue to go up. It's amazing. We are so pleased with how well Katlyn is doing.
Thursday, August 21, 2014
Day +21 I got to say that Katlyn is doing amazing!! A true blessing. Today her neutrophils are 300. Her white blood cells continue to double each day, her hemoglobin and platelets appear to be rising on their own. Things are progressing a lot faster than Johnathan or I ever imagined they would. Each morning is exciting to see her cells at the same count or going up. As I mentioned before, once her neutrophils reach 500 she will be a little more safe and feeling a lot better. Neutrophenia leaves Katlyn very susceptible to bacteria infection. Its so amazing because Katlyn had so much difficulty reaching 500 before, and here were are just a little closer everyday. With Katlyn's platelets being to a safer level today we have asked the nurse to get in touch with the message therapist and ask if they can come visit. The art therapist is finally back from vacation as spent sometime with Katlyn yesterday. The music therapist will be back next week. The nausea continues to be a problem for Katlyn and trying to get her to eat is a constant fight. This morning I even made her some cinnamon buns and to my surprise she still doesn't want to eat. On the plus side though we are starting to take all the IV drugs away and starting to introduce everything by pill. Cyclosporin is already a success with 8 pills in the morning and 8 at night. Today we will be switching MMF, another med to prevent gvhd. This pill will be 3 times a day. There are a few more meds and vitamins she has been getting by pill as well, but after today the only med that will remain by IV zantac. Then we will slowly reduce the amount of hydration by IV and increase by mouth. Because the cyclosporin is toxic to the kidneys it will be important for Katlyn to drink 2.5 liters of fluid a day. I cannot even believe we are to this point already. Aside from the nausea Katlyn is doing perfect!!! Thank you all for your continued prayers and support. It is greatly appreciated!!!
Day +19 So this morning we gave Katlyn gravol a couple of hours before she woke up. She was less nauseous when she woke up. We also gave her zofran 30 mins before each meal. She did eat a little today but it was a lot of work. We also started a new drug called maxeran. This drug is usually the third level they go to when the others fail, but gravol doesn't work for Katlyn as it helps nausea but she passes out. We started this new drug this evening and it seems to be working pretty good.
Monday, August 18, 2014
Day +18 well I'm not really sure if I should get exited yet or not because it just seems so incredibly unbelievable. Today Katlyns leukocytes went up again. Her neutrophils are at 100 for the second day in a row which is a blessing but the crazy part is that she shows 100 lymphocytes as well. I just cannot believe. We honestly did not expect to see lymphocytes so early. I even asked the doctor if it was possibly a mistake. Lol!! God is good. She is not feeling well again this morning. I made her pancakes and a piece if ham, but she had no interest. Then came the gingerale, salt and vinegar chips and zofran. Still waiting for her to come around. Her eating is very poor, although she is trying as hard as she can. Really really hoping she starts to feel better soon. (This picture was taken yesterday afternoon. Katlyn made herself and a treehouse out of playdough)
Day +17 This post will be short and sweet this morning. I promise to update more later. I just had to share this wonder news with everyone. Katlyn's white cell count almost doubled overnight...and she has 100 NEUTROPHILS!!! This amazing!!! Thank you all for your prayers and please continue to pray. Xo
Saturday, August 16, 2014
Day +16 We've been pretty busy the past couple of days taking care of Katlyn. Her appetite has gone way down. It is so frustrating because she normally is very picky eater, but right now she doesn't want to eat anything. Even the things she usually loves are not so appealing anymore. This is so frustrating because so far she has been able to avoid the feeding tube, and we are so close to making it through this without one. We do our best to push her and motivate her as much as we can but it is very tough because of her nausea and her dislike for food right now. In the past two days we have seen an increase in her leukocytes, which would be her white blood cells. She still has no neutrophils, which is the first white blood cell we look at, as of yet, but soon. Our first milestone will be with the neutrophils. Once Katlyn reaches 500 she will not be in danger as much as right now. She will actually be able to leave her room, with a mask and many precautions, but still!!! Pretty soon I will be talking about the neutrophils a lot. As we wait for Katlyn's immune system to start growing, Katlyn may feel very crummy and there may be some side effects for her like fever for instance. That is how yesterday and today has been for her. She has been experiencing headache, nausea, fatigue, chills, dizziness. Basically feeling like crap. Today Katlyn woke up feeling nauseous, and even with the meds they gave to help with this, she still felt like crap. She refused to take gravol as it makes her fall asleep, so I asked the nurse to give it to her without her knowledge. I just couldn't watch her feel like that. She did not need a transfusion yesterday or today, but her platelets are quite low. This evening she was eating a bit and smiling, so fingers crossed she is starting to feel better.
Wednesday, August 13, 2014
Day +13 was a little better than yesterday. Katlyn is still talking about needing a wig. Her hair is falling out way too fast. She literally pulls out chunks of it. She never cried about it today though. We kept telling her how beautiful she is. I explained at one point today that what she is going through is very hard, and most people could not go through this, and how she still manages to put a smile on her face is amazing. Her losing her hair was a symbol of this time and how brave she has been. I can tell it bothers her. Her platelets and hemoglobin were at good enough levels to not need a transfusion again today. The platelets are dropping quickly though so I imagine she will need a transfusion probably tomorrow. The nutritionist was pleased again today with what Katlyn ate yesterday, and once again she managed to avoid the feeding tube. She is working so hard. Even with her sore throat and now swollen gums, she still tries her hardest. She did need to have morphine twice today for pain but I think her throat might of felt a little better today. She just didn't seem to be in as much pain. She did have a few moments of nausea but no vomiting. Once again she received some lovely mail, and it is so amazing to watch her face light up as she reads all the messages of support. It also is quite overwhelming to see how many people are supporting us through this very difficult time. I've always believe that part of being healthy is positive thinking and smiling. It is toxic to worry and be sad. All of these wonderful cards, letters and packages are sure uplifting. Thanks so much.
Tuesday, August 12, 2014
Day +12 was a rough one. Last night I stayed with Katlyn as it was my turn. She woke up in the early morning hours wimpering. I got right up and she told me she was in pain and she was scared because it hurt so much. She was referring to her throat. I called the nurse to get her some morphine. I then help her in my arms until she fell asleep. She had her ultrasound this morning and then went right back to sleep. She was so tired. I can tell that this has all be very hard on her little body. She actually slept until noon, when the nutritionist came in and explained to us that if we worked very hard to get Katlyn to eat we could possibly avoid a feeding tube because we were so close to Katlyn's throat starting to feel better. We woker her up and spent all day trying to motivate her to eat.At this point it is not so much about the quality of the food that she is eating, but the calories. She has lost some weight already and we don't want her to lose anymore. Based on what Katlyn ate by the afternoon, the nutritionish was satisified enough to hold off on the feeding tube. She said that she would reassess tomorrow. Katlyn has really worked very hard all day to avoid that feeding tube. I also have to mention that she needed less morphine today than yesterday, which hopefully is a sign that the pain is starting to ease a bit. Both her hemoglobins and platelets were high enough to avoid a transfusion today which was great. I should also mention that Katlyn also never vomited today, although she was nauseous quite a bit. This afternoon she was trying to eat her snack and Johnathan was running aroung to the stores trying to get some food that might interest her, and I was playing video games. Katlyn says to me that she is losing her hair. I looked at her and she was serious. She told me that when dad was playing video games with her, she noticed a big chunk of hair fall out. I explained to her that this was a common side effect to the chemotherapy she recieved. I did not tell her about it before because I did not want her to worry about it. I explained that we needed to kill some important cells in her body to make the transplant works and because of that the very fragile cells, like hair, die as well. I explained that this is a small thing to lose to save her life. She asked me if it would grow back and I said that it would. For the next little bit she joked about it and then she would cry. She was on a rollar coaster of emotions. I am trying my best to comfort her through this loss, but this all of this is so hard for her. She is devestated and I can tell. She tells me that life is unfair and I agree that sometimes it can be and that I am so so sorry she has to grow through all of this. She is my little hero. I have never met anyone braver. So she asked Johnthan and I if would could find her a wig of golden blond hair like her own so that she doesn't have to be seen with no hair. We honestly don't even know where to start with this. We want her to be as comfortable about all of this as possible, but I'm lost and honestly way to tired to look for answers tonight. I will do my best to serach tomorrow and if anyone has any experience with this please let me know. Please continue to pray for Katlyn, as these are tough days. Thanks you all for the support.
Monday, August 11, 2014
So good news is that Katlyn does not need a transfusion today. Her last transfusions were enough to hold her over until now. Her bilirubin is elevated so she will be having an ultrasound tomorrow. This is normal because of all the drugs she is receiving and all the toxicity from the chemotherapy. The bilirubin often goes up, but we will be doing the test just to be on the safe side and make sure Katlyn's liver is ok. She is still having a hard time eating because her throat is so sore, it makes it very difficult to swallow. To help her with this, we give her morphine so that she is able to eat. You can tell she is in a lot of pain too. The morphine does not make Katlyn loopy or drowsy and that is because it is the perfect dose to help with her pain. Nausea is still a problem but so far today she has not vomited. She is getting zofran for nausea treatment all the time so it sometimes helps, and if it doesn't we turn to gravol. Gravol is not all always ideal because it makes Katlyn fall asleep. The nutritionist is happy with what Katlyn has been eating even though a lot of it is junk food. She told us to just feed her lots of food, as long as its within the neutropenia guidelines, and we can hopefully avoid having to do a feeding tube. We met with Katlyn's doctors today and were told that engraftment usually starts day +14-21, so until then we wait. This will be when Katlyn starts to get some of her cells back. YAY!!! Katlyn has been getting lots of mail, which has been uplifting. Today I could tell she was feeling a little down, and now she is busy working away on a making a story book. Her teacher was so kind and sent her these little blank story books. Its unbelievable to see how kind people have been to my daughter during this very difficult time. I can tell she feels so special opening each envelope and package. She reads all of your kind words and smiles and giggles. Thanks you so much for the lovely gift of support.
Sunday, August 10, 2014
So the transfusion went pretty well yesterday with no complications. Katlyn did have three separate episodes of nausea and vomiting and headaches were bothersome. Usually we try Tylenol first for the headaches and then hope it worsts but it has been obvious that it does not work. The pain is too much, and we really don't want Katlyn in pain, so we have decided to go right for the morphine. The dosage they have Katlyn on is perfect. She does not fall asleep. It does seem to cause some nausea at first, but today no vomiting. When Katlyn woke up this morning it became apparent that her throat was very very sore. She wouldn't even speak. When someone's neutrophils get very very low like Katlyns are right now, they become susceptible to mucositis. This is a known and very common side effect of chemotherapy. The nurse gave her morphine and now she is sitting here playing video game, eating fruit loops and drinking milk. Her white blood cells are completely wiped, so when her neutrophils start to come back the mucositis should get better and better. Her hemoglobin is fine today but her platelets are low, so it looks like she will be receiving a transfusion of platelets.
Saturday, August 9, 2014
Well I have to admit that this has got to be the hardest thing we have ever had to do with Katlyn. It is so hard to see your child in pain and not be able to do a whole lot about it. She has been getting these awful headaches in the morning and evening each day. So far we have been able to manage them with Tylenol but we let her know that if she needs more to let us know. The worst of it is that it is so bad that is causes nausea and vomiting. She is sluggish and doesn't move around much. Mornings start a lot later and even though today is started for instance, she is still laying in her bed nursing a headache and slowly trying to get some fruit loops down. As parents we do all we can think of to make her comfortable, but it still leaves us feeling helpless. Each day we watch her blood work. Right now we are not looking at the actual white blood cells as we know they are low and are going to stay low for awhile. We have been closely watching her hemoglobin and platelets each day and watching them go down. She is so tired and little bruises have been appearing on her skin. If her hemoglobin goes below 70 or platelets below 10, she needs a transfusion. Surprisingly and luckily Katlyn has never had to have a transfusion beside her IVIG treatments before. Today her hemoglobin is 67 so she will be needing a transfusion. Hopefully it will make her feel a little better. Please continue to pray for Katlyn. Right now we need to keep her safe more than ever as she is so susceptible to infection. I also hope and pray the headaches, nausea and vomiting go away and stay away too.
Day +7 has not been a great day. Katlyn woke up feeling sick. She barely ate any breakfast and then had a nap due to the dose of gravol she needed due to nausea. She finally woke up around noon but hardly ate or drank much all day. She stayed in bed and you could tell she was so tired. Her gut seems to have calmed down today anyways. After supper she complained of a headache. We gave her Tylenol and she was sick right away. Gave her Tylenol again and she dozed off a bit. Woke up and was sick two more times. The nurse gave her another dose of gravol and so now she sleeps. The nurses warned us day +8 was when children usually get sickest. Her cyclosporin dosage was increased today so maybe the headache and nausea could be from that, or it may be the chemo. We are hoping that when she wakes up she feels much better. I really missed her smile today. Please pray for little Katlyn.
Wednesday, August 6, 2014
Sometimes it is hard to find the time to write because even though we are trapped in a hospital all day, we are extremely busy. There are just so many preventative things we must do to keep Katlyn healthy. For instance, she must have cream applied all over twice a day, lip stuff twice a day, two separate mouth washes four times a day. We are tracking everything she eats and drinks on one sheet of paper, and everything that she drinks and her output on another piece of paper. On top of that we are meeting with a few doctors each day, several specialists, trying to keep our eye on everyone that comes around Katlyn, keep Katlyn calm and entertained and struggling with her eating, and course fitting in making sure we get a little bit of food once in awhile. Yesterday was extermly hectic. As I mentioned in my previous post, Katlyn tested positive for norovirus. Well, in this unit before you enter the actual patients room, there is a prep room. This rooms allows you to put on your gown, mask, wash your hands and clean anything off that you need to bring in this room. Well, with Katlyn's room we shared this prep room with the room next to us. This becomes a problem when Katlyn not only tested positive for norovirus, but especially since she is stooling and there is another immune compromised patient next to us sharing this space. So we were told that Katlyn would have to change rooms. I totally understand and I think it is great that they take measures to make sure all patients are safe. It just gives me a little more piece of mind. Not an easy task though. Everything that went into Katlyn's room had to be cleaned before it went in there. We did not want to have to go through the whole cleaning everything off once again, so we decided to put everything in pillow cases and transport it all over to her new room. So now we have found a new home for everything. We are loving the new room as it is larger and more comfortable and has a great view!! We have met with Katlyns doctors about her progress so far and she is moving along just as planned. She is having the problem with maybe norovirus or maybe chemotherapy on her gut, or even a combination of both. Other than that Katlyn is a smiley little girl, anxious to get better. The doctor this morning was quite surprised to see how well Katlyn. She thought she was going to see a sick little girl. Instead she sees Katlyn smiling and chowing down on ham and waffles. LOL!!! They say day +8 is typically the worst. One of her doctors said Katlyn might not get any sicker from chemotherapy because of the low dose. Fingers crossed that's the case. Please continue to pray for my little sweetheart. It is so warming to know we have so many people who care behind us. p.s. These pics are of Katlyn's new room and that little prep room I was writing about.
Tuesday, August 5, 2014
Saturday, August 2, 2014
Day +1 was a pretty good day. Katlyn and Johnathan had been up for most of the night before but they were in good spirits. I can tell Katlyn is having problems with her stomach but hopefully it resolves itself quickly. We have been told for the weekend to focus less on making sure Katlyn gets the right balance of the right foods and more on getting enough calories. She does not have much of an appetite and I hate it. She is still eating though, and we still have not had to turn to a feeding tube. They watch her weight and intake and outtake very closely. Today katlyn got her ivig, which she will continue to receive every week. At one point today Katlyns blood pressure was high, so they gave her medicine to lose it, And then hours later it was low. My mind was put at ease tonight though when it was back to normal. I also do notice that she has been getting a lot of headaches too, but overall she is doing well. Better than I expected, and she has a good attitude for most of the day.