This has been sort of a crazy week here at our place. Monday was chemo and the blood draw to check Hannah's adrenal function, Tuesday Hannah felt surprisingly bad, Wednesday Hannah lasted 1 1/2 hours at school before coming home too tired and then at night the news of her test results.
Although our oncologist had told us that "this isn't normally an issue, and I'm not concerned about Hannah", her cortisol level came back at .3. Without even knowing what the normal level should be, I knew this didn't sound good. Normal cortisol levels when drawn between 7 and 8 am should be 5-23. The lowest acceptable level is usually around midnight and is 3-15. This means that her body is producing almost NO cortisol.
For those of you that want to know what this means, read on. If you want to skip all the technical jargon, head to the bottoms. Basically your body's stress system relies on two main hormones-adrenaline and cortisol. Everyone is familiar with adrenaline, and how it works in your body short term if your body senses a stress situation. Cortisol is similar to adrenaline and works in the long term. These hormones control many important body functions like regulation of glucose, blood pressure, ability to fight off infection and reduce inflammation (also key in fighting tumors) and many other things also. In times of stress of the body, the cortisol level increases dramaticallly to ensure all of these important body functions continue normally. That is a very simplified explanation of a very complicated hormonal process.
The risk to Hannah with such a low cortisol level is in a stress situation to her body. Stress situations include fever, cold, virus, vomiting, anesthesia, broken bones, etc. Her body could not produce the necessary cortisol and she would most likely become hypotensive and go into shock. Doctors do not immediately look for adrenal suppression and assume that there may be an infection, so the wrong thing is treated which can result in serious complications or death. However, because we know Hannah's cortisol is low, we will always be able to mention this to the doctors if Hannah is sick or in a stress situation. The had us fill a prescription at the pharmacy already so that we always have hydrocortisone on hand, should Hannah become sick and need it right away.
My first question was how this was to be treated and how can we fix it right away. I feel like she is a walking time bomb. I assumed they would give her hyrdrocortisone to increase her cortisol level. However, the doctors want to do nothing! We are slowly weaning her body off the Megace appetite stimulant and hope that her adrenals will begin functioning normally after it is out of her system. They do not treat low cortisol in this case, because giving another steroid is doing nothing but replacing one steroid for another. It will not help the adrenals to recover their own function and will basically continue to keep them suppressed because the adrenals will not have the trigger to know the level is low. It can take some time for her body to recover on its own after the steroid is stopped, we don't know exactly how long. They are going to draw blood again 2 weeks after the Megace is completely stopped, but I have seen data that says it is sometimes 1-3 months before the levels are normal again. There is also a possibility that her levels may never come back up due to permanent adrenal failure, in which case they will decide to either supplement with a steroid for the rest of her life, or always keep the hydrocortisone on hand as a stress dose.
So for now, we are watching Hannah for any symptoms, or I should say increased symptoms. Symptoms of low cortisol can include fatigue, increased susceptibility to infection, muscle aches and pains, feeling cold, impaired memory, decreased recovery from exercise, allergies, low blood sugar, burned out feeling, depression, and reduced sodium and potassium levels to name a few. Out of this list, Hannah already has nearly 2/3 of them already. We are also keeping Hannah out of school for now. She is still on chemo which means her counts are dropping, leaving her even more susceptible to infection, especially at school. She really doesn't have the stamina now anyway to attend regularly. This means she will probably be out the whole month of December, continuing on into January. This is quite disappointing, and although I know Hannah enjoys time at home, I think this will bother her to be out for such a long time without that peer interaction. But, we have to weigh the odds and the consequences are too great. Before I say for sure though, we're going to see what her counts are on Monday when she is scheduled to get chemo again.
Sorry for the very long post, hope your eyes are still open! Thanks for visiting, and we will keep you updated as always.
xoxo Kim
Tuesday, Nov. 27, 2007
One day after chemo, Hannah spent the day at home today. After not feeling well last night, I tried to wake her this morning and she was really having a hard time. I finally decided to let her sleep and go to school a bit late, because she usually wakes by 8 or 8:30am or so. She slept until 10:30, then looked pretty rough. She had dark circles under her eyes, wasn't eating anything and just seemed very lethargic. By mid afternoon she was complaining that her stomach felt "funny", more nauseous than painful. I gave her some more anti-nausea meds at 4pm, then again before bedtime. Hopefully that will help for tomorrow.
I am surprised that this chemo has hit her so hard so early. The first two rounds of this medicine was easier than the others. The first time Hannah had this medicine, she had absolutely no reaction, and her blood counts stayed up. The second time (which was round 6) she also handled it well, by the 4th dose at the end of the round, her counts were quite low and she needed a platelet transfusion. But, through all of that, she didn't experience much other than tiredness. Llike they told us, each round is harder on the body, and this being the last, I guess even the easiest chemo affects her quite a bit. I'm a bit nervous because this is the first of four days of chemo, I'm sure it will get progressively harder.
I hope she is feeling better by Saturday, because we have been invited to go to LaGuardia airport on Saturday for a trip to the North Pole! We board the plane, and head over to the North Pole (which means we taxi over to another gate), and when we arrive, we are in the North Pole complete with Santa and elves. Hannah is very excited, and I am as well, it sounds like great fun and we are so happy that Childlife has invited us, since it's by invitation only. I'm sure we'll have lots of pictures from that.
Until then, we will just keep an eye toward the prize....the end of chemo.
xoxo Kim
I am surprised that this chemo has hit her so hard so early. The first two rounds of this medicine was easier than the others. The first time Hannah had this medicine, she had absolutely no reaction, and her blood counts stayed up. The second time (which was round 6) she also handled it well, by the 4th dose at the end of the round, her counts were quite low and she needed a platelet transfusion. But, through all of that, she didn't experience much other than tiredness. Llike they told us, each round is harder on the body, and this being the last, I guess even the easiest chemo affects her quite a bit. I'm a bit nervous because this is the first of four days of chemo, I'm sure it will get progressively harder.
I hope she is feeling better by Saturday, because we have been invited to go to LaGuardia airport on Saturday for a trip to the North Pole! We board the plane, and head over to the North Pole (which means we taxi over to another gate), and when we arrive, we are in the North Pole complete with Santa and elves. Hannah is very excited, and I am as well, it sounds like great fun and we are so happy that Childlife has invited us, since it's by invitation only. I'm sure we'll have lots of pictures from that.
Until then, we will just keep an eye toward the prize....the end of chemo.
xoxo Kim
Monday, Nov. 26, 2007
Another day of chemo down, three more to go. We arrived early today to have Hannah's blood drawn for the adrenal test, however they didn't get around to drawing it until 10:30am. Unfortunately, the cortisole levels peak around late morning and we want a reading at their lowest to be able to get an accurate reading of how much cortisole her body is producing. The test results will most likely be ambiguous, but we'll see. If they show low anyway, then we know there is a real problem, when they are supposed to be at their highest. Most likely, we will need to have it done again. Next time I'll do it myself if they can't get it together. The results should be back by Wednesday or Thursday.
Hannah had a good day today, slept during most of it and we got home about 5pm. I must say she still HATES to be accessed, today was very bad for her. It could be that she was sleeping when they finally got around to doing it, and I had to wake her up and carry her over to be tortured.
She is now happily telling everyone that we only have "three more Mondays and then we're done with chemo!" She even told the security guard today when we were waiting for our car. She has some BIG plans for after chemo, that's for sure. She is still trying to figure out a way to get to Grandma's house for Christmas. I broke the news this weekend that it really wasn't possible, even though we're done with chemo, her counts will be very low for the holidays. We don't care though (I can say that now, just as long as we're not in the hospital) as long as we didn't have any more delays. Hannah also has some very ambitious plans for making something for everyone at clinic for the holidays. I was thinking cookies, but she is thinking cookies AND ______ AND _______, can't give away the secret yet.
She was very talkative tonight on the way home, ate lunch on the way home and also a good dinner. After dinner she complained of a headache. I was then getting her ready for bed, figuring she wouldn't do any reading for school, but she wanted to read a book, so we did. She read for 55 minutes! On and on, she wanted to finish the book! Unbelievable for a kid who just had chemo pumped into her little body today. She went to bed fine, but was crying a short time later because her head hurt pretty badly and she felt sick. I gave her some more anti-nausea meds, hoping it works on her head also. We'll see how she feels for school tomorrow.
A bit blurry, but you get the idea!
xoxo Kim
Hannah had a good day today, slept during most of it and we got home about 5pm. I must say she still HATES to be accessed, today was very bad for her. It could be that she was sleeping when they finally got around to doing it, and I had to wake her up and carry her over to be tortured.
She is now happily telling everyone that we only have "three more Mondays and then we're done with chemo!" She even told the security guard today when we were waiting for our car. She has some BIG plans for after chemo, that's for sure. She is still trying to figure out a way to get to Grandma's house for Christmas. I broke the news this weekend that it really wasn't possible, even though we're done with chemo, her counts will be very low for the holidays. We don't care though (I can say that now, just as long as we're not in the hospital) as long as we didn't have any more delays. Hannah also has some very ambitious plans for making something for everyone at clinic for the holidays. I was thinking cookies, but she is thinking cookies AND ______ AND _______, can't give away the secret yet.
She was very talkative tonight on the way home, ate lunch on the way home and also a good dinner. After dinner she complained of a headache. I was then getting her ready for bed, figuring she wouldn't do any reading for school, but she wanted to read a book, so we did. She read for 55 minutes! On and on, she wanted to finish the book! Unbelievable for a kid who just had chemo pumped into her little body today. She went to bed fine, but was crying a short time later because her head hurt pretty badly and she felt sick. I gave her some more anti-nausea meds, hoping it works on her head also. We'll see how she feels for school tomorrow.
A bit blurry, but you get the idea!
xoxo Kim
Hannah's Life Video
You may have noticed that I added another element on the left hand side. This is a video from Hannah, made by Hannah and edited by Hannah. She also chose the music by herself from some I had on my computer. The song is from Mark Schultz entitled Broken and Beautiful, how appropriate is that? I didn't even know she was doing this, or see it until after she was done. She was very proud of this video, and wanted to show everyone what her life was like during her treatments. She also included many pre-diagnosis pictures of herself, which may be interesting to those of you that didn't know Hannah pre-diagnosis.
I think it's awesome, and it brings a tear to our eyes every time we watch it. Dave and I just looked at each other after we saw it for the first time, not knowing what to say.
Some of the photos are a bit blurry, and I'm trying to fix that, but until then, I hope you can view it and enjoy.
xoxo Kim
I think it's awesome, and it brings a tear to our eyes every time we watch it. Dave and I just looked at each other after we saw it for the first time, not knowing what to say.
Some of the photos are a bit blurry, and I'm trying to fix that, but until then, I hope you can view it and enjoy.
xoxo Kim
Saturday, Nov. 24, 2007
Being thankful is the theme of the weekend. This Thanksgiving has been a bit different, finding out that a good friend just had a poor MRI showing new growth of his tumor, dealing with another possible health scare with Hannah, and receiving notification that our health insurance has been cancelled. WHAT??
Ok, we became aware recently that the appetite stimulant Hannah has been on for several months is 1) a steroid and 2) the cause of adrenal suppression in many pediatric patients. What does that mean? It means that it could cause Hannah's level of cortisol to be severely decreased or eliminated all together. This is a very serious issue, and if not diagnosed, results in death due to cardiac arrest. This was brought to my attention from a post online by a friend whose son just experienced this exact situation. It was a very scary situation and required immediate interaction with supplements, which he may need to now be on for the rest of his life.
We immediately started researching and emailed Hannah's doctor (who is the same doctor as our friend that just found the problem). He did say he is not concerned about Hannah and this condition, but agreed to have her levels checked. They have to draw blood in the morning, so Monday morning before chemo, Hannah will get a blood draw to check to see if her levels are adequate. I would also like to take her off the steroid as soon as possible, but it has to be tapered down, not to cause the same issues with her levels. We'll be looking for something else to help her eat, which is still a daily struggle.
And our health insurance-it seems our insurance company has decided to pull out of New York, which means they have dropped us. They gave us the required 6 month prior notice. We are now working with our insurance rep (and good friend) to see what our options are.
But with all that craziness happening in our lives, we still have much to be thankful for. Here is Hannah's Thankful list, which was published in our local paper this week along with others from some of her classmates. Hope everyone can read it, they published her original letter.
xoxo Kim
Ok, we became aware recently that the appetite stimulant Hannah has been on for several months is 1) a steroid and 2) the cause of adrenal suppression in many pediatric patients. What does that mean? It means that it could cause Hannah's level of cortisol to be severely decreased or eliminated all together. This is a very serious issue, and if not diagnosed, results in death due to cardiac arrest. This was brought to my attention from a post online by a friend whose son just experienced this exact situation. It was a very scary situation and required immediate interaction with supplements, which he may need to now be on for the rest of his life.
We immediately started researching and emailed Hannah's doctor (who is the same doctor as our friend that just found the problem). He did say he is not concerned about Hannah and this condition, but agreed to have her levels checked. They have to draw blood in the morning, so Monday morning before chemo, Hannah will get a blood draw to check to see if her levels are adequate. I would also like to take her off the steroid as soon as possible, but it has to be tapered down, not to cause the same issues with her levels. We'll be looking for something else to help her eat, which is still a daily struggle.
And our health insurance-it seems our insurance company has decided to pull out of New York, which means they have dropped us. They gave us the required 6 month prior notice. We are now working with our insurance rep (and good friend) to see what our options are.
But with all that craziness happening in our lives, we still have much to be thankful for. Here is Hannah's Thankful list, which was published in our local paper this week along with others from some of her classmates. Hope everyone can read it, they published her original letter. xoxo Kim
Thanksgiving Day, 2007
We started off the day with a 5K Turkey Trot, an annual fundraiser for the high school. We did this race last year, before Hannah was diagnosed and Hannah came in 2nd in her age group. Last year the weather was horrible, with driving rain and cold, but today it was beautiful and even hot once you got going. I was thinking today as we did the race that last year, even with that stupid tumor in her head, she was able to run/walk the entire way!
This year she did great, walking the start, walking some during the race and even running across the finish line. The rest, she was in the stroller, enjoying the ride. I was happy we were there and she could participate at all, amazing! Here is a picture of us before the race, and of Hannah and I at the finish line.We headed out then for dinner with Aunt Kathleen and Bill. Here is what Thanksgiving looked like for us-of course Tod was there! All was great and it was a relaxing and wonderful afternoon.
I read something recently on another child's website named Coleman, who also has medulloblastoma. He is adorable and only 4 years old and just recently had a relaspse of the cancer. I visit his site often. Yesterday is mom posted that she "read something about how when you take a road trip to a beautiful place, you may have to drive through storms, forks in the road, twists and turns…the scenery along the way may not be as pretty as your final destination, but you must take that road to get you where you want to go." That’s how we’re thinking of our journey, we’re a few more miles down that road. Hannah in the home stretch.
So much to be thankful for including all of you. Our love always,
xoxo Kim
Tuesday, Nov. 20, 2007
We went in today for a clinic appointment as well as an audiogram. Hannah's counts were acceptable, her white blood count and neutrophil count went way down, which I had expected since we stopped the shots to keep them lifted. They both went down by more than 50%, while her red blood cell counts continued to go up. All counts are good enough to get chemo next week, even if they are still not in the normal range. Once they start on Monday, we will continue through, no matter how low her counts go (to a point I guess.) It's almost surreal to think that we will be starting her FINAL round of chemo next week. I hope we never have to do chemo again, that is my holiday wish.
Clinic was kind of fun for Hannah today. We brought in a huge box of crafty items from Oriental Trading. This was from Hannah's Cans for Cancer funds. She had the best time shopping for all of the goodies online. We knew they needed craft items, so we brought in several of Hannah's favorites. So many of you have had a hand in this, THANK YOU SO MUCH!
Next was Tod! We had him hidden in my bag under the blanket when we first arrived, trying to keep it low key. It was obvious that that was not to be for very long. Jan, Faye and Rob got him first, then all the nurses came in to see him, then lots of our friends at clinic including Kaitlyn and her mom Carolyn. He wasn't hidden after about 2 minutes. Hannah loved showing him around, although at one point it became a bit overwhelming for her. Not only is she still tired physically, but she is also tired emotionally and things that would not normally bother an eight year old bother her. I believe this is still a side effect from the surgery (posterior fossa syndrome), but it could be a combination of the surgery, the radiation and the chemo. I don't know if it will go away or change at all. We are used to it, but I know it surprises others (why is she crying?). She usually gets over it quickly if she is distracted.
Then we headed to get her audiogram. Her hearing is at jeopardy from some of the chemo drugs, so she has to continue to get her hearing tested. Her hearing declined again today, although only significantly at the highest frequency. Her hearing in the normal frequency is still within normal hearing range. It can still go down, but has less of a chance to do so without the damaging chemo drugs. Again, Tod was a big hit, except with one lady who said "you know that is not allowed here, but I won't make a big deal about it." We were on our way out anyway.
I forgot to take my camera today to clinic so I have no pictures to post, unfortunately. We'll try to get some more Tod pictures on here soon, I know Kaitlyn wants to see them!
xoxo Kim
Clinic was kind of fun for Hannah today. We brought in a huge box of crafty items from Oriental Trading. This was from Hannah's Cans for Cancer funds. She had the best time shopping for all of the goodies online. We knew they needed craft items, so we brought in several of Hannah's favorites. So many of you have had a hand in this, THANK YOU SO MUCH!
Next was Tod! We had him hidden in my bag under the blanket when we first arrived, trying to keep it low key. It was obvious that that was not to be for very long. Jan, Faye and Rob got him first, then all the nurses came in to see him, then lots of our friends at clinic including Kaitlyn and her mom Carolyn. He wasn't hidden after about 2 minutes. Hannah loved showing him around, although at one point it became a bit overwhelming for her. Not only is she still tired physically, but she is also tired emotionally and things that would not normally bother an eight year old bother her. I believe this is still a side effect from the surgery (posterior fossa syndrome), but it could be a combination of the surgery, the radiation and the chemo. I don't know if it will go away or change at all. We are used to it, but I know it surprises others (why is she crying?). She usually gets over it quickly if she is distracted.
Then we headed to get her audiogram. Her hearing is at jeopardy from some of the chemo drugs, so she has to continue to get her hearing tested. Her hearing declined again today, although only significantly at the highest frequency. Her hearing in the normal frequency is still within normal hearing range. It can still go down, but has less of a chance to do so without the damaging chemo drugs. Again, Tod was a big hit, except with one lady who said "you know that is not allowed here, but I won't make a big deal about it." We were on our way out anyway.
I forgot to take my camera today to clinic so I have no pictures to post, unfortunately. We'll try to get some more Tod pictures on here soon, I know Kaitlyn wants to see them!
xoxo Kim
Sunday, Nov. 18, 2007
We had a very nice weekend, knowing Hannah's counts were up we were able to have fun without the fear about risk of infection. Hannah's counts may be up, but her stamina is still very low. She went to school on Friday, and did very well although she didn't last the entire day. They called me about 2pm to pick her up, and I have never seen her so tired. She was really wiped out and looked exhausted. She came home and rested, had something to eat and we headed out to gymnastics to visit and show off Tod. We went to dinner afterwards with Tori and her mom, but Hannah was still pretty tired and wouldn't eat a bite. Wouldn't even eat the ice cream.
Saturday and Sunday we just played games, ran errands, went out to the movies and tried to keep Tod from once again peeing on the carpet. We think he had a break through tonight when all at once he ran toward the door, we let him out right away and success! Let's hope it's a trend. Hannah had been wanting to see the movie Fred Claus, so we went this afternoon. It was a good movie, and as Hannah describes it, "emotional at times". She and I were both crying. But it really got bad when, at the end of the movie, all the elves gather around the globe to look at all the children around the world opening the toys that they had made. It was very touching, but all I could think of was that "our" kids got cancer-what kind of gift is that? I had to try really hard not to completely lose it. Hannah didn't have cancer last holiday season. Let me rephrase that, we didn't know Hannah had cancer last Thanksgiving or last Christmas. Our holidays were like all of yours, with family, fun, food, thanks and lots of gifts. This year will be different. I think that THANKS will top our list. We have had a really *#$#@#& year, but we have so much to be thankful for. Cancer is not a gift anyone has on their list, but in some ways it is a gift. It is a gift to open your eyes to what really matters. It has changed our lives in so many ways, with so many wonderful people we have met, some new friends, some old ones and all of you so wonderful. Yes, this year will be different, and has been different beginning on January 30th at 1:00pm.
xoxo Kim
Saturday and Sunday we just played games, ran errands, went out to the movies and tried to keep Tod from once again peeing on the carpet. We think he had a break through tonight when all at once he ran toward the door, we let him out right away and success! Let's hope it's a trend. Hannah had been wanting to see the movie Fred Claus, so we went this afternoon. It was a good movie, and as Hannah describes it, "emotional at times". She and I were both crying. But it really got bad when, at the end of the movie, all the elves gather around the globe to look at all the children around the world opening the toys that they had made. It was very touching, but all I could think of was that "our" kids got cancer-what kind of gift is that? I had to try really hard not to completely lose it. Hannah didn't have cancer last holiday season. Let me rephrase that, we didn't know Hannah had cancer last Thanksgiving or last Christmas. Our holidays were like all of yours, with family, fun, food, thanks and lots of gifts. This year will be different. I think that THANKS will top our list. We have had a really *#$#@#& year, but we have so much to be thankful for. Cancer is not a gift anyone has on their list, but in some ways it is a gift. It is a gift to open your eyes to what really matters. It has changed our lives in so many ways, with so many wonderful people we have met, some new friends, some old ones and all of you so wonderful. Yes, this year will be different, and has been different beginning on January 30th at 1:00pm.
xoxo Kim
Thursday, Nov. 15, 2007
Good news today from clinic. We were very surprised to see that Hannah's counts were actually quite good, especially considering this is day 11 of her cycle, when she is usually very low. Her numbers were:
ANC 4272 Up from 73 on Monday (over 1500 is good)
WBC 6.89 Up from .306 on Monday (normal is 5-13)
Hemoglobin 12.3 Up from 7.61 on Monday (to be expected since she had the transfusion of blood on Monday)
Platelets 91.5 Up from 67.7 on Monday (a bit low, normal is 140-400)
Even the doctors were surprised at the turn around in her numbers since Monday, and Hannah was so happy! She will get one more shot to maintain her ANC tomorrow, just so it doesn't drop dramatically.
I had tried to prepare her for a stay today for a transfusion. I told her that this means that we will start her last round of chemo on November 26 and will be done by Christmas, HURRAY!!!!!! I can say that with certainly because once they start the round, they do not stop for low counts. Like she told Grandma, Grandpa and Aunt Susie today, "Well, we got lucky and my count was 91 which means I'll be done by Christmas".
Unfortunately that does not mean we can go on our planned trip to Grandma and Grandpa's for Christmas. Hannah's last chemo treatment will be December 17th, and she'll need a transfusion most likely either the day before Christmas or the day after. So, we can't be half way across the country. I know she will be disappointed, but we'll deal with that then, but we will be officially done, with chemo anyway, by Christmas. What a great present!
xoxo Kim
p.s. We may be thrown out of the hospital before then anyway, we are bringing Tod in next week, without anyone noticing of course, ha!
ANC 4272 Up from 73 on Monday (over 1500 is good)
WBC 6.89 Up from .306 on Monday (normal is 5-13)
Hemoglobin 12.3 Up from 7.61 on Monday (to be expected since she had the transfusion of blood on Monday)
Platelets 91.5 Up from 67.7 on Monday (a bit low, normal is 140-400)
Even the doctors were surprised at the turn around in her numbers since Monday, and Hannah was so happy! She will get one more shot to maintain her ANC tomorrow, just so it doesn't drop dramatically.
I had tried to prepare her for a stay today for a transfusion. I told her that this means that we will start her last round of chemo on November 26 and will be done by Christmas, HURRAY!!!!!! I can say that with certainly because once they start the round, they do not stop for low counts. Like she told Grandma, Grandpa and Aunt Susie today, "Well, we got lucky and my count was 91 which means I'll be done by Christmas".
Unfortunately that does not mean we can go on our planned trip to Grandma and Grandpa's for Christmas. Hannah's last chemo treatment will be December 17th, and she'll need a transfusion most likely either the day before Christmas or the day after. So, we can't be half way across the country. I know she will be disappointed, but we'll deal with that then, but we will be officially done, with chemo anyway, by Christmas. What a great present!
xoxo Kim
p.s. We may be thrown out of the hospital before then anyway, we are bringing Tod in next week, without anyone noticing of course, ha!
Tuesday, Nov. 13, 2007
Yesterday was a pretty long clinic day, so I didn't get a chance to make an entry. Hannah's counts were low as expected. Her hemoglobin was under 8, although not terribly bad at 7.61, but considering her history and where she is in her cycle, they wanted to transfuse her with blood. I was expecting this since Hannah has looked terrible in the last several days, with no color, very low energy and dark circles under her eyes. This meant a long day since they first have to "type and cross" the blood-meaning check Hannah's blood including the antibodies in her body, with donated blood that has the same blood type and antibodies. They mix the blood in the test tube first to be sure there is no reaction before giving it to Hannah. All this means it takes some time before the blood comes up for transfusion.
Her ANC (white count for infection) was only 73. Even though she was on the shots, her count was still very low. I can't imagine what it would have been without the Neupogen shots. It has gone as low as 8 during this chemo cycle previously, and she is still on the way down, so she is still on the shots. We just have to be very careful right now about germs. She is home from school again this week and not allowed in any crowded areas or high traffic areas. We will pretty much spend the week at home.
We return to clinic on Thursday, which will be day 11 of this cycle. That should be Hannah's low point in the cycle, and I would guess that she will have to have platelets, and possibly another blood transfusion also. I'm hoping for just platelets because they only take an hour to transfuse, compared the the blood which has to go in very slowly at a minimum of 3 hours.
In the midst of all this, Hannah fell and hurt her foot on Sunday at the horse show. Uncle Mike was visiting for a couple days, and Hannah came with him, Tod and Dave to see Colby in the show. She tripped right when she got there and hurt her foot. There are no noticeable signs of injury, but it has really bothered her since then. At first she couldn't put any weight on it at all. Now she is limping around, walking very gingerly. They looked at it yesterday and said it looks fine, but if it's not better by Thursday, she will have an x-ray. I think it's just sprained. These pictures are from the show, Hannah with Uncle Mike and Tod-he blends in with the blanket but he is in there, and with Colby-who got reserve champion at her show and Dave!
xoxo Kim
Her ANC (white count for infection) was only 73. Even though she was on the shots, her count was still very low. I can't imagine what it would have been without the Neupogen shots. It has gone as low as 8 during this chemo cycle previously, and she is still on the way down, so she is still on the shots. We just have to be very careful right now about germs. She is home from school again this week and not allowed in any crowded areas or high traffic areas. We will pretty much spend the week at home.
We return to clinic on Thursday, which will be day 11 of this cycle. That should be Hannah's low point in the cycle, and I would guess that she will have to have platelets, and possibly another blood transfusion also. I'm hoping for just platelets because they only take an hour to transfuse, compared the the blood which has to go in very slowly at a minimum of 3 hours.
In the midst of all this, Hannah fell and hurt her foot on Sunday at the horse show. Uncle Mike was visiting for a couple days, and Hannah came with him, Tod and Dave to see Colby in the show. She tripped right when she got there and hurt her foot. There are no noticeable signs of injury, but it has really bothered her since then. At first she couldn't put any weight on it at all. Now she is limping around, walking very gingerly. They looked at it yesterday and said it looks fine, but if it's not better by Thursday, she will have an x-ray. I think it's just sprained. These pictures are from the show, Hannah with Uncle Mike and Tod-he blends in with the blanket but he is in there, and with Colby-who got reserve champion at her show and Dave! xoxo Kim
Thursday, Nov. 8, 2007
I have managed to post Hannah's commercial that she was in for the Songs of Love Foundation here on the left hand side. It is a streamed link from YouTube, so if you have trouble viewing it here, please let me know and I can email you the direct link for YouTube. 
The commercial is only playing in the New York City area. I am still hoping to see it sometime on tv. Hannah has seen it and she said she doesn't like the part where they show her eyes moving to the side. I told her it's because she wouldn't look up during the filming of the whole thing! She was very tired, and had just been given a strong anti-nausea medication. I felt badly for her, at the time it was the last thing she wanted to be doing. But, she has listened to her song over and over and over and we love it! John Beltzer and his team do such a wonderful job and are so giving. It's a wonderful organization.
Also, here are some more pictures of Tod. Hannah took the two of him outside, and the other is of her giving him a bath today. We took him to the vet, and he is now on medicine for a cough, but he seems to be doing well overall. He weighs a whole 3.8 pounds.
Hannah had a quite a busy day today, taking Tod to the vet, doing homework and her studies, making a card for her classmates (with lots of pictures of Tod), giving Tod a bath and taking one herself. By 6:00pm she was overtired and crying. With her falling counts, her stamina is going down right now. She needs a nap, or early bedtime, or both, but overall she is hanging in there. She ate a little more today, though not up to what she was eating before chemo.
xoxo Kim
The commercial is only playing in the New York City area. I am still hoping to see it sometime on tv. Hannah has seen it and she said she doesn't like the part where they show her eyes moving to the side. I told her it's because she wouldn't look up during the filming of the whole thing! She was very tired, and had just been given a strong anti-nausea medication. I felt badly for her, at the time it was the last thing she wanted to be doing. But, she has listened to her song over and over and over and we love it! John Beltzer and his team do such a wonderful job and are so giving. It's a wonderful organization.
Also, here are some more pictures of Tod. Hannah took the two of him outside, and the other is of her giving him a bath today. We took him to the vet, and he is now on medicine for a cough, but he seems to be doing well overall. He weighs a whole 3.8 pounds. Hannah had a quite a busy day today, taking Tod to the vet, doing homework and her studies, making a card for her classmates (with lots of pictures of Tod), giving Tod a bath and taking one herself. By 6:00pm she was overtired and crying. With her falling counts, her stamina is going down right now. She needs a nap, or early bedtime, or both, but overall she is hanging in there. She ate a little more today, though not up to what she was eating before chemo.
xoxo Kim
Wednesday, Nov. 7, 2007
Here are a few pictures, yes he is really that little. We picked him up today and everyone was so excited! They couldn't have been nicer at the puppy store, and gave Hannah the puppy along with food, a leash and a collar. Riley is wondering what in the world has happened, but he has been very good with him so far. Riley is just so much bigger than Tod, that his idea of playing just knocks Tod right over! Tod seems to be holding his own, he is biting Riley as I type. They seem to like each other and there is a lot of licking going on.
Hannah slept until noon today, and then in bed again by 8:30 tonight. She isn't really eating anything, and is complaining of a stomach ache from the chemo. I hope this goes away within a couple of days. We also started shots again today in hopes that her ANC doesn't go to zero again this time, but we'll see. For now, we are lying low and staying away from crowds and germy situations. I'm sure Hannah will find plenty to do with Tod here.
xoxo Kim
Tuesday, Nov. 6, 2007
Round 8 is officially over (at least the chemo part of it, the cycle is actually 21 days long, today is day 2). But, no more chemo until Round 9!!!!! We now only have our very last round of chemo left, pretty hard to believe. I have updated her chemo schedule on the blog, always feels good to add one more round to the "purple" side.
Hannah did ok today, she doesn't feel that well, her stomach hurts, she is very tired and her counts are headed south. You can tell by looking at her, that she's not up to par. She is sleeping now, and getting hydrated through tonight. I will deaccess her here at home tomorrow morning. It was nice spending the day with Kaitlyn and her mom Carolyn today in clinic. The girls were both there getting the same chemo (part of it anyway, for Kaitlyn).
We are going to be staying in for the next several days, as I know she is very susceptible right now to infection and we want to do everything we can to stay OUT of hotel Schneiders. The only thing on the agenda is TOD, and we will hopefully know more tomorrow. I don't know who is more anxious to get the new dog, Hannah or Colby.
xoxo Kim
Hannah did ok today, she doesn't feel that well, her stomach hurts, she is very tired and her counts are headed south. You can tell by looking at her, that she's not up to par. She is sleeping now, and getting hydrated through tonight. I will deaccess her here at home tomorrow morning. It was nice spending the day with Kaitlyn and her mom Carolyn today in clinic. The girls were both there getting the same chemo (part of it anyway, for Kaitlyn).
We are going to be staying in for the next several days, as I know she is very susceptible right now to infection and we want to do everything we can to stay OUT of hotel Schneiders. The only thing on the agenda is TOD, and we will hopefully know more tomorrow. I don't know who is more anxious to get the new dog, Hannah or Colby.
xoxo Kim
Monday, Nov. 5, 2007
We finally made it-but just barely! Hannah's platelets were great, going from 61 last Thursday to a whopping 244 this week. However, as I suspected, since we stopped the Neupogen shots, her ANC went back down. It was only 687 when read by the machine, which would have stopped us from getting chemo, but to get a truer reading, they calculated it manually and it was 807. Her ANC has to be at least 750 to get chemo (which, by the way, is still considered neutropenic.)
So, today she started Round 8. She is on at home hydration right now, to be sure the chemo is flushed out of kidneys so they are not damaged. Tomorrow, same thing, more chemo, then at home hydration again. This chemo is quite long, we have to wait until her urine is sufficiently diluted, then 1 hour for the chemo, then another 4 hours of hydration at the clinic. We left this morning at 6:30am and got home tonight at 5:30pm. With all the anti-nausea drugs she also gets, along with the anti-pneumonia drug today, she wasn't so happy. Or it could have been that this morning she ate two packs of Oreos, 5 bags of Doritos, and an apple all before 11am. That was it until dinner tonight when she ate a cheese tortilla.
I think Tod would have made it feel better, but I was glad he wasn't here with us yet. They said today we could pick him up on Friday after he has a full vet check this week, but we're hoping it's a bit sooner. We'll check with them on Wednesday. She wants to take him to clinic next week for her blood check, but considering the risk for a transfusion and a very long stay at any time, that won't happen (yet). We will sneak him in one day, he could easily fit in your pocket.
One exciting thing I forgot to note from yesterday. Someone mentioned that they saw Hannah's commerical for Songs of Love on television this past weekend. She thought it was either the Discovery Channel, or TNT so I have been browsing through the stations since then trying to catch it. She said it was wonderful and brought a tear to her eyes! I'm not sure if it is playing around the country, or just in the east but I will try to find out. The production company is sending me a copy so I will post it when I receive it, but I would really love to see it on tv!
Thanks for continuing to visit and lend your support to Hannah and our family. It means a lot that you have stuck with us through this long journey.
xoxo Kim
So, today she started Round 8. She is on at home hydration right now, to be sure the chemo is flushed out of kidneys so they are not damaged. Tomorrow, same thing, more chemo, then at home hydration again. This chemo is quite long, we have to wait until her urine is sufficiently diluted, then 1 hour for the chemo, then another 4 hours of hydration at the clinic. We left this morning at 6:30am and got home tonight at 5:30pm. With all the anti-nausea drugs she also gets, along with the anti-pneumonia drug today, she wasn't so happy. Or it could have been that this morning she ate two packs of Oreos, 5 bags of Doritos, and an apple all before 11am. That was it until dinner tonight when she ate a cheese tortilla.
I think Tod would have made it feel better, but I was glad he wasn't here with us yet. They said today we could pick him up on Friday after he has a full vet check this week, but we're hoping it's a bit sooner. We'll check with them on Wednesday. She wants to take him to clinic next week for her blood check, but considering the risk for a transfusion and a very long stay at any time, that won't happen (yet). We will sneak him in one day, he could easily fit in your pocket.
One exciting thing I forgot to note from yesterday. Someone mentioned that they saw Hannah's commerical for Songs of Love on television this past weekend. She thought it was either the Discovery Channel, or TNT so I have been browsing through the stations since then trying to catch it. She said it was wonderful and brought a tear to her eyes! I'm not sure if it is playing around the country, or just in the east but I will try to find out. The production company is sending me a copy so I will post it when I receive it, but I would really love to see it on tv!
Thanks for continuing to visit and lend your support to Hannah and our family. It means a lot that you have stuck with us through this long journey.
xoxo Kim
Sunday, Nov. 4, 2007
Tomorrow is our day, so let's hope Hannah's platelets are up over 100. The doctor seemed to think it should be up by tomorrow, so we'll see. Hannah will come home with her needle still in, and receive 12 hour overnight hydration. Then we go back Tuesday for another day of chemo, and more hydration Tuesday night. I will deaccess her myself on Wednesday morning. Keep your fingers crossed everyone!
So it seems the word is out about Tod (named after Tod-with only one "d"-from the Fox and the Hound). A local puppy store offered Hannah a puppy about a month ago. We have been visting shelters and the puppy store off and on for the last several months. Recently, the owner of the puppy store told Hannah that when she was ready, any puppy in the store was hers. Talk about excited, WOW! I told her that after this round of chemo, we would go and pick out a puppy. Last week she fell in love with a small puppy-he's a cross between a Chihuahua and a Boston Terrier-a dog that is small and stays small, which was her #1 request. I finally gave in and said it was time. We don't have it yet. We were due to pick it up today, but it seems the dog may be recovering from an illness, so the vet will check it out first before we bring it home, just to be sure. I will wait to post a picture until I know for sure. Hannah was very upset tonight when we didn't bring it home and cried the whole way home. We have already been shopping and have everything all set for the new addition to our family. So, stay tuned for more information very soon!
This weekend I did have the opportunity to attend a spa day at the hospital for moms. It was a very nice day, not so much because of the wonderful aromatherapy and massage, but because of the other moms I got to meet. I see so many children and their parents at clinic, but really do not get to meet or talk to them. I know them only through their children and their children's illnesses. I met Carolyn, Jean and Debbie and spent time just taking with them. When you are able to speak together about things like neutropenia, counts, ANC, hemoglobin, Cyclophosphamide, platelets, stem cell transplant, etc. without explanation it bonds you. It really is like another world, one that you never wanted to become a part of, but one now that I feel comfortable in. This world is now our reality.
More tomorrow, after our hopefully long day at the clinic (as Carolyn put it!)
xoxo Kim
So it seems the word is out about Tod (named after Tod-with only one "d"-from the Fox and the Hound). A local puppy store offered Hannah a puppy about a month ago. We have been visting shelters and the puppy store off and on for the last several months. Recently, the owner of the puppy store told Hannah that when she was ready, any puppy in the store was hers. Talk about excited, WOW! I told her that after this round of chemo, we would go and pick out a puppy. Last week she fell in love with a small puppy-he's a cross between a Chihuahua and a Boston Terrier-a dog that is small and stays small, which was her #1 request. I finally gave in and said it was time. We don't have it yet. We were due to pick it up today, but it seems the dog may be recovering from an illness, so the vet will check it out first before we bring it home, just to be sure. I will wait to post a picture until I know for sure. Hannah was very upset tonight when we didn't bring it home and cried the whole way home. We have already been shopping and have everything all set for the new addition to our family. So, stay tuned for more information very soon!
This weekend I did have the opportunity to attend a spa day at the hospital for moms. It was a very nice day, not so much because of the wonderful aromatherapy and massage, but because of the other moms I got to meet. I see so many children and their parents at clinic, but really do not get to meet or talk to them. I know them only through their children and their children's illnesses. I met Carolyn, Jean and Debbie and spent time just taking with them. When you are able to speak together about things like neutropenia, counts, ANC, hemoglobin, Cyclophosphamide, platelets, stem cell transplant, etc. without explanation it bonds you. It really is like another world, one that you never wanted to become a part of, but one now that I feel comfortable in. This world is now our reality.
More tomorrow, after our hopefully long day at the clinic (as Carolyn put it!)
xoxo Kim
Thursday, Nov. 1, 2007
No chemo today, unfortunately Hannah's platelets were only 61, and they had to be 100 to get the chemo. It's probably better anyway that her body has some extra time to come up and past 100, so that she is stronger before the drug totally collapses her again. We have an appointment for Monday, and expect that her counts will be fine to have chemo on Monday and Tuesday.
We all had fun yesterday trick-or-treating. Hannah made it to about 8 houses, before she tired out. Then I carried her for another 8 houses before I got tired, and she made it the rest of the way in style riding in the wagon. Colby took her bag around for her, so she still collected a lot of candy (just what we need, more candy!!). She is a great big sister and had no trouble carrying around 2 heavy bags of candy. I think Hannah got a bit bored in the wagon, watching everyone else run from house to house. She told me that it was not that much fun because she was too tired. I have to give her a lot of credit though, she didn't complain and was a trooper. It was hard not to notice the enormous disparity between Hannah in the wagon and all the other kids running around having a great time on Halloween. The look on her face was so sad and quiet and lonely.
Colby went afterwards with her friends and Hannah wanted to stop at two houses on the way home-the neighbor down the road that we don't know with a golden retriever, and our neighbors the Rohrbachs. We did both together and called it a night.
Here are a few pictures of us on Halloween.
xoxo Kim
We all had fun yesterday trick-or-treating. Hannah made it to about 8 houses, before she tired out. Then I carried her for another 8 houses before I got tired, and she made it the rest of the way in style riding in the wagon. Colby took her bag around for her, so she still collected a lot of candy (just what we need, more candy!!). She is a great big sister and had no trouble carrying around 2 heavy bags of candy. I think Hannah got a bit bored in the wagon, watching everyone else run from house to house. She told me that it was not that much fun because she was too tired. I have to give her a lot of credit though, she didn't complain and was a trooper. It was hard not to notice the enormous disparity between Hannah in the wagon and all the other kids running around having a great time on Halloween. The look on her face was so sad and quiet and lonely.
Colby went afterwards with her friends and Hannah wanted to stop at two houses on the way home-the neighbor down the road that we don't know with a golden retriever, and our neighbors the Rohrbachs. We did both together and called it a night.
Here are a few pictures of us on Halloween.
xoxo Kim
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