Please continue to pray for our family, and lifting up Katherine for healing from our Almighty Healer.
I spoke with the doctor this afternoon. He called to tell us about the bone marrow test that Katherine had done on Wednesday this week. The bone marrow was not clear of the leukemia cells; it's clearing but it's not completely free of cancer cells. The protocol is that children have a bone marrow test 8 days after starting Chemo; if that test is clear, then there is no need for another bone marrow test and they are considered to be in remission. However, some children do not have a clean marrow test at 8 days, and therefore require a follow up test on day 15. Katherine, falls in the latter group. She is scheduled to go in for another bone marrow test next Wed, March 5th at 8:30am.
Specific Prayer requests:
* Please pray that the medication is doing it's job and killing off the cancer cells in her bone marrow.
* Please pray that next week's bone marrow test comes back clear and she can be considered to be in remission.
* Please pray that her platelet count doesn't plummet. The doctor said today that he doesn't expect them to come down dramatically, but you never know. They have dropped a little bit since we started this process, so please just pray that they stay in a range where she will not require a platelet transfusion.
* Please pray for us to be diligent in keeping her eating a healthy diet. That her palate would stay "healthy". Seems like she doesn't have a sweet tooth right now, which is awesome because she is NOT asking for sweets. She knows what she wants to eat, and she asks for it. So, praise God that she is asking for good things.
* Please pray for her energy level. That the Lord would renew her strength each day. She has her moments during the day, where she just doesn't seem to have the same energy level. Pray that she would take good naps during the day, so she can be renewed in the afternoon. Please also pray that she sleeps well at night, so that she's well rested and ready for the new day in the morning. She has seemed to be a little worn out in the evenings and asks to go "night night".
* Please pray for energy for all of us.
Friday, February 29, 2008
Does she really eat all that...
Yep. Kateli is eating like she has never eaten before!! She seems to amaze me each day with the things that she eats and asks for. She has quite the appetite since starting her treatment to beat this leukemia. Well, and we were warned by the doctor that the medications would cause her appetite to increase tremendously--but we were a little skeptical. After all, our little girl has always been so petite and eaten such small portions! Well, no more!!
The other morning she had TWO scrambled eggs. That's right, not one but TWO eggs and a tall glass of milk. A few minutes later she shared abuelo's oatmeal! For snack, she will ask for a string cheese and after she's done with the first, she comes up to me and says "more cheese, please" The girl eats two string cheeses!! She will also eat two yogurts, when she wants that for her after nap snack!! Seems like everything lately comes in twos. Something else I've found that she asks for a lot is "ham and cheese"...usually that is one or the other. Like I said, when she wants cheese; she will eat two string cheeses. When she wants ham, she will eat 3 slices of honey ham. We take it out of the fridge, roll it up like a taco and she's happy snacking on that. Yesterday though, she surprised me with her request. After she woke up from nap, I usually offer her something to eat; apple, yogurt, crackers etc etc; usually she takes me up on one of the offers. This was our conversation yesterday afternoon....
Mommy: "would you like some yogurt for snack?"
Kateli: "no, mommy. Papas"
Mommy: "Would you like some apple?"
Kateli "no, mommy. Papas"
Mommy: "what about some melon?
Kateli: "no, mommy. Papas"
Mommy: "what about some cheese? or some ham?"
Kateli: "NO. Papas!"
The girl wanted mashed potatoes for her snack!!! I had to get up and make her mashed potatoes at 3:30 in the afternoon!! She ate about 3/4 of the potato at that sitting, and finished it off after dinner!! A WHOLE potato!!! My goodness!!! Then for dinner she had a request as well. She wanted "arror con chicha"; that is her way of asking for rice, red beans and sausage! How could I refuse. We ate just that for dinner last night and she had a pretty good serving!!
We'll see what she comes up with today!
The other morning she had TWO scrambled eggs. That's right, not one but TWO eggs and a tall glass of milk. A few minutes later she shared abuelo's oatmeal! For snack, she will ask for a string cheese and after she's done with the first, she comes up to me and says "more cheese, please" The girl eats two string cheeses!! She will also eat two yogurts, when she wants that for her after nap snack!! Seems like everything lately comes in twos. Something else I've found that she asks for a lot is "ham and cheese"...usually that is one or the other. Like I said, when she wants cheese; she will eat two string cheeses. When she wants ham, she will eat 3 slices of honey ham. We take it out of the fridge, roll it up like a taco and she's happy snacking on that. Yesterday though, she surprised me with her request. After she woke up from nap, I usually offer her something to eat; apple, yogurt, crackers etc etc; usually she takes me up on one of the offers. This was our conversation yesterday afternoon....
Mommy: "would you like some yogurt for snack?"
Kateli: "no, mommy. Papas"
Mommy: "Would you like some apple?"
Kateli "no, mommy. Papas"
Mommy: "what about some melon?
Kateli: "no, mommy. Papas"
Mommy: "what about some cheese? or some ham?"
Kateli: "NO. Papas!"
The girl wanted mashed potatoes for her snack!!! I had to get up and make her mashed potatoes at 3:30 in the afternoon!! She ate about 3/4 of the potato at that sitting, and finished it off after dinner!! A WHOLE potato!!! My goodness!!! Then for dinner she had a request as well. She wanted "arror con chicha"; that is her way of asking for rice, red beans and sausage! How could I refuse. We ate just that for dinner last night and she had a pretty good serving!!
We'll see what she comes up with today!
Wednesday, February 27, 2008
First Outpatient Treatment...
We've had quite the morning! Our night wasn't that much better, as Kateli was up a couple of times trying to come into our bed for the night. We fought the first few times, and then about 4am this morning, finally gave in. Yes, she woke up in our bed! Oh, well! Joshua did great, he slept like a champ and is feeling a whole lot better. The little guy still has stuff that he is coughing up, and a runny nose, but I suspect that will last a few more days still.
Today, was Kateli's first outpatient treatment appointment. We were scheduled for 8:30am. Our dear friend, Mrs Jo came over this morning to stay with Joshua while Dan and I took Kateli to the appt. It's been a little tough this morning, keeping Kateli from eating anything. She has been asking for "water" and "eat" since about 4am, and we couldn't give her anything! She was supposed to be npo after 4am :(. We got to the clinic and immediately she was inserted her "needle" into the port, and some blood was drawn. Kateli didn't like that part--it was as though the needle in her port incapacitated her left arm. She drew up that arm against her chest and didn't release until the needle was out after the appt; about 4 hours later! :( We spent a lot of time in the waiting area, which is play room for the kids. However, Kateli didn't play. She sat in my lap the entire time that we waited.
We met a lady and her son; whom we had seen at previous appointments. This time, I talked to the mom and found out a little more about them. Her son, Jared, was diagnosed with Burkitt Lymphoma in Sept last year; shortly after his 10th birthday. The tumor in his neck was was removed and Jared went through Chemo for a couple of months. Weeks before his last chemo and final scans to make sure Jared was clear of cancer, he relapsed and had another small tumor removed from his neck area. He is again undergoing chemo; this round harsher than the first and is scheduled for a bone marrow transfer in St. Louis next month. Please keep this sweet family in your prayers as well. Jared is the middle son of three boys in the family. He has an older brother, 14, and a younger brother, 4. Please lift them up as they are traveling tonight to St. Louis for some final meetings concerning the upcoming bone marrow.
When Kateli was finally got called back to get the bone marrow test done, Dan held her as all the nurses came in and out of the room, preparing for the procedure. The anesthesiologist came in, asked a few questions, and then gave Kateli the "white milk" stuff to put her in a sleep state. Dan handed Kateli over to the nurses and we walked out to wait in the waiting area for the doctor to come out when he was done. It was only a few minutes this time, Praise the Lord! The doctor came out, said she was fine; the procedure had been very quick and we could go back in there with her for when she woke up. While she was asleep, they did administer another dose of the chemo drugs. Kateli woke up shortly thereafter, and guess what she said? "momma, eat" "ham and cheese"....had to get that poor girl some food!! She ate almost an entire chocolate muffin before we left the hospital and then got home to eat a few slices of ham and two string cheeses! The girl has quite an appetite these days!! She is eating well and feeling great!
Thank you for your continued prayers.
Specific prayers:
* Please keep Chris, Dawn and Jared in your prayers. Pray for safe travels to and from St. Louis. Also pray for their meetings with drs and nurses at the St. Louis Children's hospital tomorrow. May the Lord put everything in place for a successful bone marrow transfer for Jared soon.
* Please pray for Kateli to continue taking the chemo with such grace. She is so strong; and has taken these rounds without a side effect! Please pray that things continue to move well with her treatment.
* Please pray for us as we try to figure out a way to get Kateli to take her meds in the morning and at night. She is on a steroid that must taste HORRIBLE!! We smell it, and the thing wreaks, so I can't imagine what it tastes like. It's quite the ordeal to get her to take the med twice a day. We've tried juice, gummies, and jelly to chase it down with but that doesn't seem to have Kateli convinced either.
* Please just pray as the Holy Spirit leads you.
Thank you for your prayers, love and your support!
Today, was Kateli's first outpatient treatment appointment. We were scheduled for 8:30am. Our dear friend, Mrs Jo came over this morning to stay with Joshua while Dan and I took Kateli to the appt. It's been a little tough this morning, keeping Kateli from eating anything. She has been asking for "water" and "eat" since about 4am, and we couldn't give her anything! She was supposed to be npo after 4am :(. We got to the clinic and immediately she was inserted her "needle" into the port, and some blood was drawn. Kateli didn't like that part--it was as though the needle in her port incapacitated her left arm. She drew up that arm against her chest and didn't release until the needle was out after the appt; about 4 hours later! :( We spent a lot of time in the waiting area, which is play room for the kids. However, Kateli didn't play. She sat in my lap the entire time that we waited.
We met a lady and her son; whom we had seen at previous appointments. This time, I talked to the mom and found out a little more about them. Her son, Jared, was diagnosed with Burkitt Lymphoma in Sept last year; shortly after his 10th birthday. The tumor in his neck was was removed and Jared went through Chemo for a couple of months. Weeks before his last chemo and final scans to make sure Jared was clear of cancer, he relapsed and had another small tumor removed from his neck area. He is again undergoing chemo; this round harsher than the first and is scheduled for a bone marrow transfer in St. Louis next month. Please keep this sweet family in your prayers as well. Jared is the middle son of three boys in the family. He has an older brother, 14, and a younger brother, 4. Please lift them up as they are traveling tonight to St. Louis for some final meetings concerning the upcoming bone marrow.
When Kateli was finally got called back to get the bone marrow test done, Dan held her as all the nurses came in and out of the room, preparing for the procedure. The anesthesiologist came in, asked a few questions, and then gave Kateli the "white milk" stuff to put her in a sleep state. Dan handed Kateli over to the nurses and we walked out to wait in the waiting area for the doctor to come out when he was done. It was only a few minutes this time, Praise the Lord! The doctor came out, said she was fine; the procedure had been very quick and we could go back in there with her for when she woke up. While she was asleep, they did administer another dose of the chemo drugs. Kateli woke up shortly thereafter, and guess what she said? "momma, eat" "ham and cheese"....had to get that poor girl some food!! She ate almost an entire chocolate muffin before we left the hospital and then got home to eat a few slices of ham and two string cheeses! The girl has quite an appetite these days!! She is eating well and feeling great!
Thank you for your continued prayers.
Specific prayers:
* Please keep Chris, Dawn and Jared in your prayers. Pray for safe travels to and from St. Louis. Also pray for their meetings with drs and nurses at the St. Louis Children's hospital tomorrow. May the Lord put everything in place for a successful bone marrow transfer for Jared soon.
* Please pray for Kateli to continue taking the chemo with such grace. She is so strong; and has taken these rounds without a side effect! Please pray that things continue to move well with her treatment.
* Please pray for us as we try to figure out a way to get Kateli to take her meds in the morning and at night. She is on a steroid that must taste HORRIBLE!! We smell it, and the thing wreaks, so I can't imagine what it tastes like. It's quite the ordeal to get her to take the med twice a day. We've tried juice, gummies, and jelly to chase it down with but that doesn't seem to have Kateli convinced either.
* Please just pray as the Holy Spirit leads you.
Thank you for your prayers, love and your support!
Sunday, February 24, 2008
Have I woken up from a dream??
Wow! Yes! We're home!
Have we really been in the hospital for a week with our little girl? Has she really been diagnosed with Leukemia? Did she really have surgery to have a port installed in her chest? Has she really begun chemotherapy?
Wow!! Yes! These were the events of last week. And, today we were home again having a "normal" day. Could we really call it normal?? I don't know! Is it all relative? but relative to what? Is it relative to our "normal" of say, three weeks ago? or is it "normal" relative to what we have to look forward to in the next couple of years as we proceed with treatment? I don't know!
Kateli had a great day. She was rosy cheeked all day. She played. She ran. She jumped. She got mad. She wanted her way. She ate. And she wanted to watch Shrek all afternoon. I almost forgot today what this new change of pace was all about, until we had to give her the meds. It is going to take a little while to get organized and knowing what meds she needs, what days and what times; but we will get there. We spent the day at home. We didn't go out. It was too cold. Joshua was still running a temp this morning; so we had to keep the kids a little away from each other. It's a hard task to accomplish, when Kateli wants to "hold" her brother's little hand all the time. She did, and then we washed her hands. She did again, and we washed her hands again. And again. And again. It's hard to keep those two apart. Joshua lights up when he sees his big sister, and she just gets this huge smile on her face, when she sees him.
It's late now. Both kids had been in bed for a couple of hours, until a few minutes ago. Kateli is up. She's in our bed now. Yes, we put her up to bed in her room. We did the same last night too. Somehow, though she ended up in our bed this morning. And I'm afraid the same will happen tonight. I'm sure she'll wake up with us tomorrow morning. It's really hard to leave her upstairs right now--seems like she is too far. Are we being weak? Maybe. Maybe not. But there is some security for us in having her close right now, and knowing that she's not running a temp of 101.5 (which by the way would merit her being admitted to the hospital). We'll get there. She'll get there too. It may take a couple of nights, but we will get back to it; where we are all sleeping in our appropriate rooms and beds :).
Daddy goes back to work tomorrow. It seems like just another Monday morning on the horizon; but with special visitors; abuela and abuelo are here to play.
Good night for now.
Have we really been in the hospital for a week with our little girl? Has she really been diagnosed with Leukemia? Did she really have surgery to have a port installed in her chest? Has she really begun chemotherapy?
Wow!! Yes! These were the events of last week. And, today we were home again having a "normal" day. Could we really call it normal?? I don't know! Is it all relative? but relative to what? Is it relative to our "normal" of say, three weeks ago? or is it "normal" relative to what we have to look forward to in the next couple of years as we proceed with treatment? I don't know!
Kateli had a great day. She was rosy cheeked all day. She played. She ran. She jumped. She got mad. She wanted her way. She ate. And she wanted to watch Shrek all afternoon. I almost forgot today what this new change of pace was all about, until we had to give her the meds. It is going to take a little while to get organized and knowing what meds she needs, what days and what times; but we will get there. We spent the day at home. We didn't go out. It was too cold. Joshua was still running a temp this morning; so we had to keep the kids a little away from each other. It's a hard task to accomplish, when Kateli wants to "hold" her brother's little hand all the time. She did, and then we washed her hands. She did again, and we washed her hands again. And again. And again. It's hard to keep those two apart. Joshua lights up when he sees his big sister, and she just gets this huge smile on her face, when she sees him.
It's late now. Both kids had been in bed for a couple of hours, until a few minutes ago. Kateli is up. She's in our bed now. Yes, we put her up to bed in her room. We did the same last night too. Somehow, though she ended up in our bed this morning. And I'm afraid the same will happen tonight. I'm sure she'll wake up with us tomorrow morning. It's really hard to leave her upstairs right now--seems like she is too far. Are we being weak? Maybe. Maybe not. But there is some security for us in having her close right now, and knowing that she's not running a temp of 101.5 (which by the way would merit her being admitted to the hospital). We'll get there. She'll get there too. It may take a couple of nights, but we will get back to it; where we are all sleeping in our appropriate rooms and beds :).
Daddy goes back to work tomorrow. It seems like just another Monday morning on the horizon; but with special visitors; abuela and abuelo are here to play.
Good night for now.
Saturday, February 23, 2008
We are home!
It's 11:45pm here, and we've been home with Kateli for about an hour and half or so. We didn't put her to bed right away, as she was so excited to be home from the hospital that she was checking everything out; all her toys, the dog, her room etc etc. It was so great to see that beautiful smile on her face as we walked in the door and she saw Renny!! Renny was excited to see her as well! Brother was already asleep, so she won't see him until tomorrow but other than that she checked everything else out in the house. And now she is in bed--not quite asleep yet, but she's peacefully stayed in her bed. We had a real hard time deciding where she would sleep tonight. Part of us wanted her to sleep with us--something about having her close. The other part of us was okay with letting her sleep in her own room--getting back to normalcy at home...and that part won!
Kateli got her injection today, as was scheduled and she took it very well. She was strong, and didn't cry too much. They even gave her a toy, the nurses were so proud of her! Her body tolerated the medication, as she had no allergic reactions to it--praise the Lord!
We were at the hospital late tonight, because Katherine did end up getting the blood transfusion. What an answer to prayer though! God allowed for Katherine's hemoglobin to increase the last couple of days so that the doctor didn't push for the transfusion. In the meantime, a friend of ours donated blood for her, and we were hoping it would be ready in time for when kateli needed the transfusion. The blood was processed and ready today; Kateli's hemoglobin was low again on her chemistry's this morning. God's timing is perfect! Praise the Lord.
I will write more tomorrow. Too tired now. Thank you for all of your prayers while we were in the hospital. Please continue to pray for us, as we are by no means done with this journey, we are just beginning!
Kateli got her injection today, as was scheduled and she took it very well. She was strong, and didn't cry too much. They even gave her a toy, the nurses were so proud of her! Her body tolerated the medication, as she had no allergic reactions to it--praise the Lord!
We were at the hospital late tonight, because Katherine did end up getting the blood transfusion. What an answer to prayer though! God allowed for Katherine's hemoglobin to increase the last couple of days so that the doctor didn't push for the transfusion. In the meantime, a friend of ours donated blood for her, and we were hoping it would be ready in time for when kateli needed the transfusion. The blood was processed and ready today; Kateli's hemoglobin was low again on her chemistry's this morning. God's timing is perfect! Praise the Lord.
I will write more tomorrow. Too tired now. Thank you for all of your prayers while we were in the hospital. Please continue to pray for us, as we are by no means done with this journey, we are just beginning!
Pray for Release...
I must have been tired tonight or something. I fell asleep without updating the blog. I am at home tonight. Dan is at the hospital with Kateli. About 15 mins ago, our little guy woke up complaining that he is not feeling well tonight; so, I'm up! I've nursed him and put him back down in hopes that he will get a good nights rest. In the meantime, I will update you on today's events...
Kateli continues to make great strides! She was again in great spirits today. When I got to the hospital this morning, she was off the IV and running around like any 2 year old--what JOY it is for us to watch her be. She's got so much energy, it's amazing! Dan mentioned to me that when the doctor came in this morning, he asked him if she had so much energy because of the steroids, or if that was just her--IT'S JUST HER!! Hallelujah! I believe she got some more wagon rides this morning; and she walked around the floor tonight, even as she was hooked up to the IV. Dan says she held her own IV cord as she walked! This is great news, as it has seemed that she felt prisoner to the bed when she was hooked up--no more!
Tomorrow, my parents fly in; my mother in law flies out; and we may be coming home from the hospital. Exciting exciting!! Not for sure yet, but it is a possibility! Kateli will get a chemo drug injection in her leg tomorrow; and they want to make sure that she handles it well before sending us home. Dr K came in this afternoon and talked to us about the protocol when at home; he gave us prescriptions for her medications that we will need to administer at home; which to us is a good sign!
Specific Prayer Requests:
* Please continue to lift up Joshua in your prayers. Little man has lost the sparkle in his eyes with this flu stuff.
* Please pray for safe travels for abuela and abuelo as they fly in tomorrow afternoon.
* Please pray for safe travels for grandma tomorrow as she flies out.
* Please lift up Kateli in your prayers, especially at 11am tomorrow morning. This is when she is scheduled for the injection. Per the doctor, the injection is painful!! Please pray that she would take it like a champ, and that she would not experience too much pain.
* Please pray that her body handles the injected drug well, so that we can come home.
* Please also pray, that if Kateli does get released tomorrow, that we manage to keep her healthy (since her brother is sick)
* PLEASE GIVE PRAISE TO THE LORD. KATELI'S HEMOGLOBIN HAS CONTINUED TO GO UP THE LAST TWO DAYS! SHE HAS NOT NEEDED THE TRANSFUSION! (but don't stop praying that it continues to go up!!)
* Please just continue to pray for us as the Holy Spirit leads you
Kateli continues to make great strides! She was again in great spirits today. When I got to the hospital this morning, she was off the IV and running around like any 2 year old--what JOY it is for us to watch her be. She's got so much energy, it's amazing! Dan mentioned to me that when the doctor came in this morning, he asked him if she had so much energy because of the steroids, or if that was just her--IT'S JUST HER!! Hallelujah! I believe she got some more wagon rides this morning; and she walked around the floor tonight, even as she was hooked up to the IV. Dan says she held her own IV cord as she walked! This is great news, as it has seemed that she felt prisoner to the bed when she was hooked up--no more!
Tomorrow, my parents fly in; my mother in law flies out; and we may be coming home from the hospital. Exciting exciting!! Not for sure yet, but it is a possibility! Kateli will get a chemo drug injection in her leg tomorrow; and they want to make sure that she handles it well before sending us home. Dr K came in this afternoon and talked to us about the protocol when at home; he gave us prescriptions for her medications that we will need to administer at home; which to us is a good sign!
Specific Prayer Requests:
* Please continue to lift up Joshua in your prayers. Little man has lost the sparkle in his eyes with this flu stuff.
* Please pray for safe travels for abuela and abuelo as they fly in tomorrow afternoon.
* Please pray for safe travels for grandma tomorrow as she flies out.
* Please lift up Kateli in your prayers, especially at 11am tomorrow morning. This is when she is scheduled for the injection. Per the doctor, the injection is painful!! Please pray that she would take it like a champ, and that she would not experience too much pain.
* Please pray that her body handles the injected drug well, so that we can come home.
* Please also pray, that if Kateli does get released tomorrow, that we manage to keep her healthy (since her brother is sick)
* PLEASE GIVE PRAISE TO THE LORD. KATELI'S HEMOGLOBIN HAS CONTINUED TO GO UP THE LAST TWO DAYS! SHE HAS NOT NEEDED THE TRANSFUSION! (but don't stop praying that it continues to go up!!)
* Please just continue to pray for us as the Holy Spirit leads you
Thursday, February 21, 2008
The hits keep on coming
Marleny had to take our little boy Joshua in to the Dr. Today because he's had a fever and the crud. Unfortunately, he's got the flu along with Mommy. I (Dan) am finally starting to feel a little bit better, and was able to spend the entire day with Katherine. She did extremely well today, and was given several hours away from her IV. We went for extended wagon rides around the floor. Grandma Sue was gracious enough to jump in the wagon with Katherine and about 10 stuffed toys. We were having fun, and hopefully won't get kicked out of the hospital. We ran up on a bunch of blue-suited hospital execs who didn't seem to share our enthusiasm for wagon rides or stuffed animals.
There was very little hospital activity today. Katherine had blood drawn this evening for type matching. The Dr. is getting prepared for a blood transfusion. We are praying that it will not be needed, but are preparing as best we can. They switched the Steroid medication from being IV administered to oral, to start preparing us to be able to leave the hospital. Katherine didn't seem to like the taste, but did a good job of taking it. The next Chemo treatment is planned for Saturday. It will be an injection into the leg muscle tissue.
Thanks to all for the continued prayers for our family.
There was very little hospital activity today. Katherine had blood drawn this evening for type matching. The Dr. is getting prepared for a blood transfusion. We are praying that it will not be needed, but are preparing as best we can. They switched the Steroid medication from being IV administered to oral, to start preparing us to be able to leave the hospital. Katherine didn't seem to like the taste, but did a good job of taking it. The next Chemo treatment is planned for Saturday. It will be an injection into the leg muscle tissue.
Thanks to all for the continued prayers for our family.
Keep it coming...
Today has been good. Katherine had a great day! I spent the morning at the hospital with Dan and Kateli. In the afternoon, I went home to spend some time with Joshua. I miss my little guy. I miss his giggles and his endless smiles. Though, today I didn't get the normal smiles from the little guy; he's not feeling real well. Grandma said that last night was a bit rough for him; he was stuffy and couldn't sleep real well. This morning he was running temperatures and before I came home, he had ran almost 103F! I took him to the doctor's this afternoon to have him tested for the FLU (I tested positive for the FLU on Tuesday). Turns out, my little guy has come down with a case of the flu!! YIKES!! and there is nothing that we can do to treat him, aside from doing the usual--keep the head of his bed elevated, lots of fluids, tylenol, and suctioning his nose. He's just got to wait it out! After dropping Joshua back off at home this afternoon, I decided I'd go back to the hospital and see how Kateli was doing.
Oh, my heart leaped with joy when I walked into her room and she jumped out of daddy's lap to come greet me!! She was up and about!! She was taken off of the IV for the afternoon and she was enjoying the freedom that comes with that. We went for a walk on the floor and she was just smiles and giggles!! What joy! Praise the Lord that she is doing so well!! Thank you for all your prayers.
Specific prayer requests:
* Please pray for Joshua, that he would recover quickly from this bug; and not have any complication that could come with a cold (ear infection, pneumonia etc etc)
* Please continue to pray for recovery for Dan, Grandma and I from these colds. We've all shared these germs and are now just ready to be rid of them and healthy again!
* Please continue to pray for Katherine and how her body tolerates the medications.
* PLEASE GIVE PRAISE TO THE LORD FOR HOW WELL KATELI IS DOING WITH ALL OF THIS. She is a trooper and a strong little girl! God is good!
Oh, my heart leaped with joy when I walked into her room and she jumped out of daddy's lap to come greet me!! She was up and about!! She was taken off of the IV for the afternoon and she was enjoying the freedom that comes with that. We went for a walk on the floor and she was just smiles and giggles!! What joy! Praise the Lord that she is doing so well!! Thank you for all your prayers.
Specific prayer requests:
* Please pray for Joshua, that he would recover quickly from this bug; and not have any complication that could come with a cold (ear infection, pneumonia etc etc)
* Please continue to pray for recovery for Dan, Grandma and I from these colds. We've all shared these germs and are now just ready to be rid of them and healthy again!
* Please continue to pray for Katherine and how her body tolerates the medications.
* PLEASE GIVE PRAISE TO THE LORD FOR HOW WELL KATELI IS DOING WITH ALL OF THIS. She is a trooper and a strong little girl! God is good!
Wednesday, February 20, 2008
Another day gone by...
...and a hard one at that. Hard for me (Marleny). I've been really calm and put together the last few days, but this afternoon was hard for me. Katherine had a good day, which is what counts! As I wrote in this morning's update, she woke up happy and asking to watch tv. I don't know how many times Shrek has played today, but I'm sure it's been too many!! :) In any case, the day was really uneventful (which in this situation is a GOOD thing!!). Katherine and I spent a good part of the morning and early afternoon together. Dan took our little guy to the pediatrician for his 6 month check up. Joshua is doing well and growing beautifully. He was not to happy to get 4 pokes on his little legs though; and was not feeling great this evening while they were here at the hospital visiting. Let's just hope the little guy is not catching any of what mommy and daddy have; rather he is just having the post-vaccination discomfort that is common. I knew he was not feeling very well, when I went to him from the car and he didn't smile when he saw me. He was a bit cranky and just not having too much fun.
I learned this morning, while Dan was at the pediatrician with Joshua, that the medication that's been administered to Katherine the last two days was a heavy steroid; which does help to kill the leukemia cells, but is not considered one of the chemotherapy drugs. The doctor peeked in this morning to tell me that he had written the orders for Kateli's first chemo drug to be given today. I had a really hard time when the nurse came in to administer the medication. It was so evident; she was wearing a gown, a mask and some heavy duty gloves. She verified Katherine's ID bracelet and then began administering the drug into her port IV. As she sat there doing this, and I listened to Katherine cry and call out in fear/pain, I broke into tears. Here was this nurse, wearing these heavy duty gloves, so as not to get her bare hands on this drug, and she was injecting into my 2 year old's blood stream. If she wasn't wanting to touch it, what was it doing in our little girls fragile body? Yes, that was hard. And then tonight, as I wind down and think about the day, I realize that the end purpose of the drug is to make our baby well again.
I was feeling worn down earlier today, and wanting to just go home. Wanting to go back to the days when my life was about waking up in the morning and having both kids in bed with us playing and watching Veggie Tales together. The days that would start with Katherine coming down from her room in the morning, and hearing her ask for her brother's "mano" (hand). She loves to hold his hand, smile at him and say "dias mano" (good morning, brother). This afternoon, when Joshua came, I realized that not much has changed. It doesn't happen in the morning, these days, but as soon as she sees him she wants to just hold his little hand in hers. How sweet is that? My babies as so dear to my heart. I don't know how I could get through a day without seeing them interact and love on each other. I miss Joshua a lot during the day, and I know that he misses us too; but he is in great caring and loving hands with Grandma Sue.
So, the doctor came in to talk to us this afternoon about Katherine's bloodwork and her need to get a blood transfusion. He communicated that it was not urgent to do it today, but that she will more than likely need one in the next two weeks. Apparently, once a kids hemoglobin starts to go down it continues down that slippery slope; this is because the Leukemia cells are overcrowding all of those red blood cells. 'Transfusion' just makes us both nervous, so we've asked about the option of having a person that we know donate blood for Kateli. The doctor has advised how we can go about getting this accomplished but is not sure how soon the donation can be processed and be ready for Katherine.
Specific prayers:
* For Joshua, that his discomfort would stem from the vaccines and not a cold that he's caught from either of us. Please pray that he would feel better and be back to his smiley self tomorrow. I really miss my little giggle monster.
* For the directed donor request that we have made. A dear friend of ours has offered to be a donor and will be going tomorrow morning to the blood institute. Please pray that everything will go smoothly, that she is able to donate and that the donation is processed quickly so that it can be on hand for when Kateli needs it.
* Continued strength for Dan and I.
* Continued strength for our little girl Katherine.
I did manage to get the camera out today and get some shots. Here are some...
I learned this morning, while Dan was at the pediatrician with Joshua, that the medication that's been administered to Katherine the last two days was a heavy steroid; which does help to kill the leukemia cells, but is not considered one of the chemotherapy drugs. The doctor peeked in this morning to tell me that he had written the orders for Kateli's first chemo drug to be given today. I had a really hard time when the nurse came in to administer the medication. It was so evident; she was wearing a gown, a mask and some heavy duty gloves. She verified Katherine's ID bracelet and then began administering the drug into her port IV. As she sat there doing this, and I listened to Katherine cry and call out in fear/pain, I broke into tears. Here was this nurse, wearing these heavy duty gloves, so as not to get her bare hands on this drug, and she was injecting into my 2 year old's blood stream. If she wasn't wanting to touch it, what was it doing in our little girls fragile body? Yes, that was hard. And then tonight, as I wind down and think about the day, I realize that the end purpose of the drug is to make our baby well again.
I was feeling worn down earlier today, and wanting to just go home. Wanting to go back to the days when my life was about waking up in the morning and having both kids in bed with us playing and watching Veggie Tales together. The days that would start with Katherine coming down from her room in the morning, and hearing her ask for her brother's "mano" (hand). She loves to hold his hand, smile at him and say "dias mano" (good morning, brother). This afternoon, when Joshua came, I realized that not much has changed. It doesn't happen in the morning, these days, but as soon as she sees him she wants to just hold his little hand in hers. How sweet is that? My babies as so dear to my heart. I don't know how I could get through a day without seeing them interact and love on each other. I miss Joshua a lot during the day, and I know that he misses us too; but he is in great caring and loving hands with Grandma Sue.
So, the doctor came in to talk to us this afternoon about Katherine's bloodwork and her need to get a blood transfusion. He communicated that it was not urgent to do it today, but that she will more than likely need one in the next two weeks. Apparently, once a kids hemoglobin starts to go down it continues down that slippery slope; this is because the Leukemia cells are overcrowding all of those red blood cells. 'Transfusion' just makes us both nervous, so we've asked about the option of having a person that we know donate blood for Kateli. The doctor has advised how we can go about getting this accomplished but is not sure how soon the donation can be processed and be ready for Katherine.
Specific prayers:
* For Joshua, that his discomfort would stem from the vaccines and not a cold that he's caught from either of us. Please pray that he would feel better and be back to his smiley self tomorrow. I really miss my little giggle monster.
* For the directed donor request that we have made. A dear friend of ours has offered to be a donor and will be going tomorrow morning to the blood institute. Please pray that everything will go smoothly, that she is able to donate and that the donation is processed quickly so that it can be on hand for when Kateli needs it.
* Continued strength for Dan and I.
* Continued strength for our little girl Katherine.
I did manage to get the camera out today and get some shots. Here are some...
A good night slumber
Thank you for your prayers, once again! My mother in law told me yesterday, "when one part of the body of Christ[you] is hurting, the rest of the body of Christ hurts with you [all of you]" I can't thank all of you enough, because believe me, we are certainly feeling the support and love that comes from the body of Christ.
Just a bit of an update about our night and morning. We all got a great night's rest. Katherine fell asleep last night at about 9pm; Dan and I probably hit the sack about 10pm or so. We had a bit of an incident when Kateli woke up about 3:30 am, complaining a bit. I reached over to pull her little blankie over her, and realized that it was soaked. I was confused, as I had no idea, for a minute, why her blankie and her bed were soaked. And then it hit me, we didn't change her diaper before going to bed. She looked so peaceful and we were so thankful that she was sleeping soundly that we didn't want to bother her. Our poor baby, with all the fluid that is constantly pumped into her IV, a single diaper doesn't do for overnight! We turned the lights on; called the nurse for new bedding and a new gown; changed her out of her clothes; put on a new diapey and were back asleep soundly in a matter of about 45mins. The wake up didn't seem to bother Katherine, she was able to go back to sleep without a problem and woke up this morning close to 8am.
Katherine is doing so well this morning. She woke up happy and didn't seem to be in discomfort. She woke up asking to watch Shrek--so I obliged and popped in the DVD.
She had blood drawn this morning to check her levels, and it seems that her hemoglobin is low. The doctor has not been in this morning to talk to us, but the nurse said that usually when a little kid's hemoglobin level falls below and 8, they do a 1cc transfusion of blood.
Specific prayer requests for this morning:
* Please pray that if she is given a transfusion today, or at any other time during this treatment for that matter, that the blood she is given has been thouroughly tested and that NOTHING slipped through the lab that tested it.
* Please pray for Dan and I, that we would get over what we've got. We went to the doctor yesterday and found out today that I've got the flu (as unbelievable as it may sound, Dan didn't test positive for the flu). We've both been wearing masks while in the room with Kateli, so as to not expose her. We just need to be well.
* Please pray for our day today. Katherine has already had her second dose of the chemo medication that they started her on yesterday. Just please continue to pray that her body handle it well.
More updates tonight...
Just a bit of an update about our night and morning. We all got a great night's rest. Katherine fell asleep last night at about 9pm; Dan and I probably hit the sack about 10pm or so. We had a bit of an incident when Kateli woke up about 3:30 am, complaining a bit. I reached over to pull her little blankie over her, and realized that it was soaked. I was confused, as I had no idea, for a minute, why her blankie and her bed were soaked. And then it hit me, we didn't change her diaper before going to bed. She looked so peaceful and we were so thankful that she was sleeping soundly that we didn't want to bother her. Our poor baby, with all the fluid that is constantly pumped into her IV, a single diaper doesn't do for overnight! We turned the lights on; called the nurse for new bedding and a new gown; changed her out of her clothes; put on a new diapey and were back asleep soundly in a matter of about 45mins. The wake up didn't seem to bother Katherine, she was able to go back to sleep without a problem and woke up this morning close to 8am.
Katherine is doing so well this morning. She woke up happy and didn't seem to be in discomfort. She woke up asking to watch Shrek--so I obliged and popped in the DVD.
She had blood drawn this morning to check her levels, and it seems that her hemoglobin is low. The doctor has not been in this morning to talk to us, but the nurse said that usually when a little kid's hemoglobin level falls below and 8, they do a 1cc transfusion of blood.
Specific prayer requests for this morning:
* Please pray that if she is given a transfusion today, or at any other time during this treatment for that matter, that the blood she is given has been thouroughly tested and that NOTHING slipped through the lab that tested it.
* Please pray for Dan and I, that we would get over what we've got. We went to the doctor yesterday and found out today that I've got the flu (as unbelievable as it may sound, Dan didn't test positive for the flu). We've both been wearing masks while in the room with Kateli, so as to not expose her. We just need to be well.
* Please pray for our day today. Katherine has already had her second dose of the chemo medication that they started her on yesterday. Just please continue to pray that her body handle it well.
More updates tonight...
Tuesday, February 19, 2008
Off to a good start
Kateli's surgery was successful. The port went in without incident and is working. They finally removed that uncomfortable IV they had placed in our little girl's arm, and are now using the new port. The spinal tap appears to look normal and the injections went well. The Dr. was able to get all of the samples needed in order to determine 'subtype' and do genetic studies. Praise be to God! Thank you all for your prayers, they are felt and keeping us 'put together' during these hard times.
Today was a FULL day. We started out rough this morning, as Katherine woke up about 4am with a very high fever. She was administered tylenol to bring it down, and started an antibiotic. Then the phlebotomy team came in to draw blood; the nurse came back in to check her temp about 5am; and again about 5:30am; then the tech came in to take her vitals; and well you get the picture. Keep in mind that seeing nurses, or anyone in scrubs for that matter, walk into our room is not Katherine's favorite part of the day, and as soon as they touch her she breaks down saying "oui, no oui" Needless to say, with all the commotion this morning she hardly rested soundly. It seemed that as soon as we would calm her down and get her to doze off, someone else would walk through the door and get her riled up again. She went into surgery about 10:30am--It was so hard to put her in the nurses arms and watch them walk into the OR, listening to our little girl call out for her mommy! We waited patiently in the family waiting room for the doctor to come and tell us everything had gone well. About 11:30 am the doctor came and told us everything had gone well. Katherine had done well, and that Dr. K (that is the hemotologist) was in with her getting the samples needed for further testing. So, we waited some more. Finally at about noon, they called us that Katherine was in recovery and we could be with her for when woke up. Again, my heart sunk to see our little girl, so fragile laying in that huge bed crying out in discomfort. She quickly calmed down when I took her in my arms and cradled her. Again, she was calm as long as it was just mommy and daddy that was near her, as soon as the recovery nurse got near, she'd lose it a little bit.
Katherine will get her first chemo drug tonight, so please pray that she tolerates it well. The doctor said that in the beginning the kids do okay with the drug, but to expect Katherine to be edgy and hard to satiate her appetite in a couple of weeks.
Once again, thank you so much to all of you who are lifting us up in prayer. Specific prayers that we ask for tonight:
* Complete recovery from colds for Dan and I, so that we can completely focus on our little girl.
* One of the concerns with the port and the type of drugs that Katherine will be receiving is that the incision could open back up--the steroids could delay it from healing. So, please pray that her incision would heal quickly; that there would not be any infection at the incision site; and certainly that the incision would not open up.
* Please pray for sound rest for all of us. We are all pretty worn out, physically.
Today was a FULL day. We started out rough this morning, as Katherine woke up about 4am with a very high fever. She was administered tylenol to bring it down, and started an antibiotic. Then the phlebotomy team came in to draw blood; the nurse came back in to check her temp about 5am; and again about 5:30am; then the tech came in to take her vitals; and well you get the picture. Keep in mind that seeing nurses, or anyone in scrubs for that matter, walk into our room is not Katherine's favorite part of the day, and as soon as they touch her she breaks down saying "oui, no oui" Needless to say, with all the commotion this morning she hardly rested soundly. It seemed that as soon as we would calm her down and get her to doze off, someone else would walk through the door and get her riled up again. She went into surgery about 10:30am--It was so hard to put her in the nurses arms and watch them walk into the OR, listening to our little girl call out for her mommy! We waited patiently in the family waiting room for the doctor to come and tell us everything had gone well. About 11:30 am the doctor came and told us everything had gone well. Katherine had done well, and that Dr. K (that is the hemotologist) was in with her getting the samples needed for further testing. So, we waited some more. Finally at about noon, they called us that Katherine was in recovery and we could be with her for when woke up. Again, my heart sunk to see our little girl, so fragile laying in that huge bed crying out in discomfort. She quickly calmed down when I took her in my arms and cradled her. Again, she was calm as long as it was just mommy and daddy that was near her, as soon as the recovery nurse got near, she'd lose it a little bit.
Katherine will get her first chemo drug tonight, so please pray that she tolerates it well. The doctor said that in the beginning the kids do okay with the drug, but to expect Katherine to be edgy and hard to satiate her appetite in a couple of weeks.
Once again, thank you so much to all of you who are lifting us up in prayer. Specific prayers that we ask for tonight:
* Complete recovery from colds for Dan and I, so that we can completely focus on our little girl.
* One of the concerns with the port and the type of drugs that Katherine will be receiving is that the incision could open back up--the steroids could delay it from healing. So, please pray that her incision would heal quickly; that there would not be any infection at the incision site; and certainly that the incision would not open up.
* Please pray for sound rest for all of us. We are all pretty worn out, physically.
Monday, February 18, 2008
We are ready to fight this battle with you Lord...
...and with all of our prayer warriors frontline.
First of all, thank you to all of who have been so kind to visit our website and leave kind, uplifting and encouraging comments on our blog. We appreciate all of your prayers, all of your love and your support as we go forward in this journey that God has put before us. Know that we are feeling the Lord's love, and His hand upon us through your faithful prayers.
Thank you, thank you Lord for showing us your love through these wonderful people who are lifting us up to you!
Katherine has been admitted to the hospital. We arrived this afternoon, and met with the doctor for a little while before being walked over to the new Children's Hospital at St Francis, that was just inagurated a couple of weeks ago.
Thank you Lord for your timing. We see your hand in this Lord, and are confident that you are watching over our little girl!
The new children's hospital is an amazing complex, wifi, flatpanels and x-box 360 in every room. All of that stuff is wonderful, but this floor just opened today- so we had a little difficulty getting the basics (tissue, a straw, water pitcher, blankets, clock etc...) We can almost see our house from the window, so it feels good to be close to brother Joshua.
Katherine had a long afternoon/evening. She HATES getting IVs, and mommy and daddy start getting a little bit anxious after several failed attempts of starting the IV. At 5pm we finally got all of the bloodwork and IV completed, so Katherine got to enjoy some time playing PacMan and Frogger left-handed before dinner.
At 10:00 PM they tried to a start a saline drip, only to find IV wasn't working. Daddy was experiencing some more of the anxiety mentioned above. Fortunately there was a sweet nurse that got the IV fixed without Katherine screaming too much.
It is now 11:30PM and Katherine is sleeping soundly with the IV working properly. Tomorrow morning at 10:00am she is scheduled for surgery to receive the port in her chest, and to have additional bone marrow drawn for more specific subtyping of her Leukemia. She will also receive a spinal tap with injections of medication into her spinal fluid to insure that the Leukemia hasn't/doesn't spread into her central nervous system. Lots of scary stuff for us all.
Please be praying for us before, during and after her surgery, specific prayer requests:
* Steady hands for Dr Rothenbach who will be performing the surgery
* Calm spirit for Kateli as she is prepped for the procedure
* Calm nerves for us as we see her off to surgery and await the doctor to tell us that she is doing well post surgery.
* That Kateli tolerate the anesthesia well
* That the medicatioin to be injected into her spinal fluid does not cause severe side effects
* and please just lift up prayers as you are lead by the Holy Spirit
We would prefer not to have any visitors tomorrow, since we don't know how Katherine will be feeling after the surgery. We will update this blog when she is ready for visitors. Thank you for your understanding.
First of all, thank you to all of who have been so kind to visit our website and leave kind, uplifting and encouraging comments on our blog. We appreciate all of your prayers, all of your love and your support as we go forward in this journey that God has put before us. Know that we are feeling the Lord's love, and His hand upon us through your faithful prayers.
Thank you, thank you Lord for showing us your love through these wonderful people who are lifting us up to you!
Katherine has been admitted to the hospital. We arrived this afternoon, and met with the doctor for a little while before being walked over to the new Children's Hospital at St Francis, that was just inagurated a couple of weeks ago.
Thank you Lord for your timing. We see your hand in this Lord, and are confident that you are watching over our little girl!
The new children's hospital is an amazing complex, wifi, flatpanels and x-box 360 in every room. All of that stuff is wonderful, but this floor just opened today- so we had a little difficulty getting the basics (tissue, a straw, water pitcher, blankets, clock etc...) We can almost see our house from the window, so it feels good to be close to brother Joshua.
Katherine had a long afternoon/evening. She HATES getting IVs, and mommy and daddy start getting a little bit anxious after several failed attempts of starting the IV. At 5pm we finally got all of the bloodwork and IV completed, so Katherine got to enjoy some time playing PacMan and Frogger left-handed before dinner.
At 10:00 PM they tried to a start a saline drip, only to find IV wasn't working. Daddy was experiencing some more of the anxiety mentioned above. Fortunately there was a sweet nurse that got the IV fixed without Katherine screaming too much.
It is now 11:30PM and Katherine is sleeping soundly with the IV working properly. Tomorrow morning at 10:00am she is scheduled for surgery to receive the port in her chest, and to have additional bone marrow drawn for more specific subtyping of her Leukemia. She will also receive a spinal tap with injections of medication into her spinal fluid to insure that the Leukemia hasn't/doesn't spread into her central nervous system. Lots of scary stuff for us all.
Please be praying for us before, during and after her surgery, specific prayer requests:
* Steady hands for Dr Rothenbach who will be performing the surgery
* Calm spirit for Kateli as she is prepped for the procedure
* Calm nerves for us as we see her off to surgery and await the doctor to tell us that she is doing well post surgery.
* That Kateli tolerate the anesthesia well
* That the medicatioin to be injected into her spinal fluid does not cause severe side effects
* and please just lift up prayers as you are lead by the Holy Spirit
We would prefer not to have any visitors tomorrow, since we don't know how Katherine will be feeling after the surgery. We will update this blog when she is ready for visitors. Thank you for your understanding.
Sunday, February 17, 2008
ALL in God's Hands
It is with a heavy heart that we plead with you to lift our family up in prayer. We have had a rough few days over the last week and a half, but our world was turned upside down on Thursday of last week, Valentine’s Day nonetheless. Two weeks ago, I felt a small lymph node under Katherine’s arm, in addition to the ones that we had been feeling on her neck for a little while now. We were concerned and so I took her in to see the pediatrician. The doctor was of the opinion that the lymph nodes were small, moveable, and not in any scary place; so they should not be any cause for alarm. However, because this was the second time that I brought her in to check her lymph nodes, the doctor decided to do a CBC (complete blood count) test on her, to set our minds at ease. He also ordered an x-ray of her chest to make sure there were no swollen lymph nodes in the chest area. That afternoon, the pediatrician called me and said that they x-ray was normal, there were no nodes in the chest; however, the blood test had come back a bit abnormal. He explained to me that her white blood count, as well as her hemoglobin was just a bit under the expected ranges for a child her age, and therefore, he wanted us to meet with another doctor, a hematologist a St. Francis. Of course I was scared by the type of doctor that we had been referred to, but I stayed optimistic and we went the following day to meet with the new doctor. There was not a clear diagnosis made, as the hematologist too could not find an explanation as to why Katherine had so many little lymph nodes around her neck or why her blood counts were off, so he suggested that we just watch the counts for a few days. They did more bloodwork, and while there was some fluctuation in the numbers, her white blood count or hemoglobin never came up to the normal ranges. Under the microscope the pathologist could not identify any cells that looked suspicious, only what they referred to as “immature cells” that they thought would mature into the “normal cells”. So, the hematologist called one afternoon to ask us that we go ahead and do a bone marrow check on her to rule out leukemia. That scared me even more, leukemia! We were a little nervous to put her through that procedure, but decided to do it. We took her in last Thursday for a bone marrow check. Katherine did great, she did fight to get the IV put in her little hand, but after that she handled it like a champ. After the procedure she woke up quickly and did just fine the rest of the day. And we waited to hear from the doctor. At around 5:45 we got the call. The doctor was calling us with the results.
Unfortunately the news we received from the doctor was not positive. In fact, it was shocking and devastating at the same time. Kateli has been diagnosed with pre cursor B cell Leukemia, or Acute Lymphoblastic Leukemia (ALL). I will never forget what I felt in my heart as I heard the doctor speak those words to us over the phone. My heart sunk, my mouth dried up and my eyes welled up with endless tears for about the next two days. It was horrible to come to grips with that kind of news, especially seeing as how our little girl is asymptomatic.
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