Archive for November 2010

November 30th, 2010-good news and bad news   7 comments

Yet another tough day for Charlotte.  Her attitude and energy level were still hampered by the effects of the chemo.  Her appetite and thirst are still not up to where we would like them to be, but she does seem to be trying.  She wanted to be pushed around in the stroller most of the day (mostly by Mommy), and was ready for an early nap by noon.  It was very unlike her to not want to play with any of the grandparents who came to visit her.  But when she awoke, she seemed like her normal self again for about an hour.  She was jumping up and down, climbing on the couch to look outside, and even walked to the playroom on her own.  This made Mommy especially happy since the doctors requested an OT consult today because of how little Charlotte wanted to walk on her own lately.  Mommy defended Charlotte stating that she was just tired, but regardless, she will have another visit from the OT later in the week to continue assessing her.   By the time chemo started again at 4pm Charlotte was again tuckered out and I arrived back to the hospital for the second time in two days to hear Charlotte crying as I walked to her room.  She has not been enjoying the eye drops she must receive every 2 hours and I seem to plan my arrival at the same time they are being administered.    It was more stroller/hall time until about 8:00 when she was able to be unhooked for the night again.  She squeaked another carton of milk in during the last hour to keep away the nightly IV fluids.  After she was free from her tubies, she seemed in a little better mood again and was ready for bed by 8:30.

As we expected, between yesterday and today, we received some news from the recent tests that have been done.  I am still considering all of this information unofficial because we haven’t heard these results directly from Charlotte’s doctor, but the weekly attending physician told us late yesterday afternoon that Charlotte’s biopsy aspirate results had come in.  He said there were 7% blasts, but most of those appeared to be good healthy cells.  When Amy asked about a specific leukemia cell count, she was told by the resident, less than 1%.  So if those results are final, then we consider Charlotte’s round two of chemo to be a large success.  Dr Diamond had told us that she would have been happy with the same results after round 1 (4%) again so for her leukemia to continue to go down after another round of treatment we think is very promising.

However, the doctor stopped by tonight and told us that he had heard through the grapevine (so again, the results are not official), that Molly’s HLA Type tests were back and she is not a match for Charlotte.  This means that we won’t be able to use the umbilical cord blood from Molly to transplant stem cells into Charlotte to regrow healthy, non-leukemic cells.  Needless to say, we consider this a pretty big blow to our treatment plan and Amy and I are pretty upset.  There was only a 25% chance of her being a match, but we had continuously thought that the timing of Molly’s birth was too close to Charlotte’s diagnosis and treatment schedule for it not to be our own little miracle.  We were both pretty certain that this was going to be a nice example of how His plan would come together for us in this otherwise uncertain time.   The doctors have already begun to search for an unrelated bone marrow donor (and currently have asked 2 individuals to come in for further testing) and if the correct one is found and willing, we believe the plan would be to transplant the donated marrow into Charlotte in the beginning of 2011.  The process to properly test a potential donor for all HLA combinations can take weeks so we are not sure what or when the next step would be.

But to end on another positive note, tonight is Charlotte’s last dose of chemo this round (technically 4am Wednesday morning).  So that means Wednesday will be her last day receiving the steroid and the eye drops.  Although it sounds ironic, we hope to see Charlotte’s mood and activity level improve as her numbers drop.

We ask you all to continue to keep Charlotte in your prayers.  And we would again like to remind you to consider becoming a bone marrow donor.  You might not be able to help Charlotte directly, but you may be able to save somebody else’s Charlotte.

Posted November 30, 2010 by L. Elske in Uncategorized

November 29th, 2010   5 comments

Today was another tough day, and boy was Amy was glad that her mother was there to help!  Their time was evenly divided between watching either Molly or Charlotte and they were worn out by the time I got back from work.  The chemo regimen is still getting the better of Charlotte, but she is still maintaining her desire to stay out of her room.  Most of her day was spent with Amy or Grandma walking her around the halls in her stroller!  Her appetite was OK again today but her thirst almost died out completely until this evening.  For dinner tonight she requested her usual chicken wings, but this time she said “Nice warm chicken wings”.  So Amy worked extra hard to make sure they were a good temperature by the time she got them.  Towards the end of the night, we had to try every trick in the book to get her to drink a couple of cartons of milk and water so she wouldn’t have to receive liquids via IV while she slept.

She was pretty tired most of the day, even took a few non-standard naps, and her cute little attitude didn’t show up until about 8pm tonight when she was ready for bed.  She even gave Grandma the thumbs up when she went back to the Ronald McDonald House for the night.  But she went down quickly and we hope it is another restful night for the Elske clan.

Posted November 29, 2010 by L. Elske in Uncategorized

November 28th, 2010   2 comments

Charlotte is still feeling the effects of both the chemo and the steroids today, but she did have a little better appetite.  Her attitude was very much up and down today, as was her energy level.  Some times she would seem happy and very active wanting to walk the halls and play in the play room.  And then other times she might be a little grumpy or very lethargic, even taking a quick 3 minute catnap in our arms or the stroller.

But overall, it was another good day.  Charlotte had no major meltdowns and no major medical issues.  Her rash never came back at the 4am chemo treatment, nor the 4pm treatment so who knows what that was?  And today is another day of her high dose chemo behind us.  Only a couple more to go!  We should be getting the official biopsy results back tomorrow and by Tuesday or Wednesday we might know if Molly is a match for a stem cell transplant so this week should be chock full of news be it good or less than good.  Keep your fingers crossed and prayers coming for the good style news.

Molly is still keeping Amy up most of the night.  Hopefully she can get into a little better schedule as I return to work tomorrow.  Grandma W plans on being here for the week yet so we are very thankful for that!

Check out the new page about the Charlotte’s Web of Hope benefit on December 4th.  Click on the top of this page-underneath the “Just Another WordPress.com Site” text.

Posted November 28, 2010 by L. Elske in Uncategorized

November 27th, 2010   3 comments

We are already starting to see the side effects of the dexamethasone (this is the steroid they gave her last round to reduce the side effects of chemo-nausea, fever, etc).  Amy and I didn’t like it because it made her very moody and un-Charlotte-like in many ways.  But we only needed a day or two of the feverish Charlotte (at the end of round two) to realize that we will take a semi mobile moody Charlotte over a very feverish, doesn’t want to do anything or go anywhere Charlotte pretty much any day.  So we agreed with Dr Diamond when she said one of the ways to get through the high doses of chemo in round three would be to use the dex every day to keep the more serious chemo side effects away.  It was started yesterday before her first hit of chemo and will continue for the 5 days like the chemo drugs do.

Charlotte started off the morning by throwing her pancakes, puzzle pieces, toys and nuks around the room.  She was generally unhappy when the doctors and nurses came in to see her and the “uppie-me” (translated:  lift me up and carry me would you for crying out loud!!) attitude continued throughout the day.  But she remained mobile for the most part, even walking around the halls later in the evening with a little dixie cup of water-she saw Mommy and Daddy get a cup of water at the ice machine and she wanted one too.  So we walked around the halls and every once in a while she would stop and sip a little water out of her cup.  She wouldn’t carry around an empty cup as Mommy and Daddy had stuff in their cups, so she wanted some in hers too.  She was so cute, and acted like such a big girl even when we knew, by her attitudes, that she wasn’t feeling the greatest.  At her afternoon dose of chemo, she did get a very prominent rash around her face for a brief period of time.  Her right and left cheeks were white and normal colored, but her forehead, and around her eyes, ears and under her chin all got a crimson color for about 5-10 minutes, then went away.  It didn’t seem to bother her, but it appeared pretty quickly and worried us a bit.  The resident took a look but it was gone by the time she got here and she said the fact that it went away by itself is a good sign.  The nurse

Charlotte loves the view from her new room. She even found Nemo outside our window-see the construction barrel on its side in the ice?

had just started her afternoon dose of chemo literally 10 seconds before this, so were aren’t even sure if it got to her yet through her IV tubes.  But earlier in the day she had the dex and zofran (anti nausea) and also a once-monthly anti-biotic pentamidine.  So we will monitor her 4am dose of chemo this morning to see if it returns.

She still has a few hours in the morning, afternoon and evening when she doesn’t have any IV hooked up at all.  This morning when her nurse, Tracy, unhooked her, she said “You’re free Charlotte” and Charlotte ran around the room hollering “FREE!!!” and jumping up and down!  We think it was another decent day.  Grandma W was here again all day and G&G E showed up early too and hung around most of the day.  Molly is doing pretty good.  She still keeps Mommy up most of the night wanting to be fed, but last night was a small improvement.  Hopefully tonight will be better yet.  Charlotte didn’t eat very well today at all (we think she is either nauseated or the chemo has changed her sense of taste), but drank lots of milk and still stayed active.  For the doses of chemo she is getting, we think that is OK.

 

Check out the newly created “page” for information on the December 4th benefit in Clyman called Charlotte’s Web of Hope.  You can find it at the top of this page-just to the right of the “Home” link.

There will be live music, raffles, a live auction, drinks, food, bake sale, and more.  And most importantly, once you attend, you will now know where Clyman is!!

Posted November 27, 2010 by L. Elske in Uncategorized

November 26th, 2010-Admitted for round three of chemo.   7 comments

Today started out much the same as any other day this week.  Charlotte woke up bright and early at the earliest sign of light and kicked Daddy out of her bed (when she cries in the middle of the night, Daddy goes and lays down with her to comfort her.  He usually ends up falling asleep next to her and if he wakes up before dawn, goes back to his room and finishes the night.  Charlotte has gotten so used to Mommy or Daddy sleeping with her in the hospital room since there is only room for one of us to sleep on the couch/bed.  We can try to break this habit when she spends the majority of her time out of the hospital, not in it.)

So, on with the story…

Charlotte woke up at the crack of dawn and hopped out of bed.  She headed straight towards the family room where Grandma W was falling into her deflating air mattress once again.  She yelled at Grandma, “Wake up Gamma!”

If you look closely, on the far side of this huge room, you can see a little Elske girl napping in her car seat while we try to unpack our things.

She then ran, with Daddy chasing after her to get her pajama bottoms on and her diaper changed, to Mommy’s room where Mommy and baby Molly were both just getting used to a deep sleep for the first time that night.  She proceeded to wake the two of them up and got herself caught for that diaper change.  Poor Mommy and Molly….they had maybe three or four hours last night until CJ came around, but that was still more than the previous nights.

So the five of us were up and at ‘em well before we really felt like it, but like I mentioned, it has been like that all week.  Mommy and I were not terribly excited to get admitted today.  Round three is only 5 days of two chemo drugs but one of them is 1.5x the dose she had been getting and the other is 10x the dose!  There are also eye drops that Charlotte will need to be given every 2 hours the she is awake to prevent conjunctivitis!  So we are concerned about how this next week will go.  So we had hopes that we would be packed and ready to go by this morning but we knew why we weren’t.  We still had a lot of packing to do and a couple of loads of wash to finish so we started at that.  After an hour or so, we saw that we were making a little progress so all of the work continued.  Charlotte felt like helping us by removing things we packed into bags/boxes/suitcases and throwing them around the room.  So it took a considerable amount of time to pick up after her “help”.

We also noticed that, as the morning went on, she was beginning to get a little moody.  We found her pointing out the front window, looking for Mommy’s van.  We finally figured out that she was getting bored with packing at home, and wanted to get going.  She said “hospital” and smiled.  She said “pokes” and didn’t cry.  She mentioned “friends” and when Mommy and I figured out she meant her nurses.  Charlotte was ready to get back to her second home well before Mommy and Daddy were!  But we finished our packing and left Grandma W cleaning up the mess we called a house for the last two weeks.  While driving to Madison, I found myself feeling less and less nervous with each mile that I drove.  And Charlotte was in a swell mood once we got going.

In this picture, you will see a little larger Elske girl napping in the middle of this enormous room while full boxes, suitcases, and bags compliment the large open space areas.

We got to the hospital and Charlotte couldn’t have been more excited!  She was so happy to see the familiar faces that she jumped with joy every time she met someone she knew.  She eagerly hopped on the scale and went down the hall to get her height measured!  She left our sight half a dozen times taking the nurses for a walk down the all-too-familiar halls.  Any time we wondered where she went, we only needed to peek in on the play room and she was there having a grand old time.

We were admitted to a different room, one a little closer to the nurses station.  We thought this could be a little more helpful if Amy ever needed a hand or another set of eyes on either of the kids if she were here alone.  They had even brought in a baby swing for us to use!  But this room was the same size as our previous room and we knew there were two here that were a wee bit bigger.  One of those happened to be right next door and we could hear the sound of the janitorial staff doing their thorough cleaning in it (customary after someone is discharged) so we asked if that one would be available soon.  Sure enough it was and we moved in next door.  I am thrilled with this new room as it has maybe 20 more square feet as the others but we can make it work!!  Even the bathroom is a little bigger!!

Charlotte was such a big girl that she only wanted Mommy with her while the nurses accessed her port.  This has always been a two parent job and even then it is tough.  But she went in the procedure room eagerly and was recovered and done crying in the shortest time yet!  She was happy to go down for a nap shortly after that and I continued to move our stuff in from the fully loaded van.  Every minute we were there seemed like home and we knew we had made the right decision to come back when we did.  Charlotte had a great nap and her chemo started before she even woke up.

Grandma W finally returned to us after she had scrubbed our nasty house clean (thanks Grandma!!) and we had a nice dinner in the room.  Charlotte had a great appetite and was ready to do more walking!  So Grandma took her out for a stroll while Mommy and I finished our unpacking and arranging.  We love the new room.  It has enough space for the baby swing and pack and play and lots of Charlotte’s toys.

You will see how "form meets function" in this new line of contemporary closet/pantry/storage cabinets.

Charlotte also took her eye drops pretty well (better than we thought she would) and recovered fully as soon as the nurse left her alone.  We started our bedtime routine about 8:30 and it took until after 10 to get Charlotte to sleep.  But we warned her that if she was not sleeping by 10, the nurse would have to come in for another set of eyedrops.  Shortly after 10, she was still struggling with sleeping and she agreed with Mommy that we should call the nurse in.  She was even saying “eyedrops” to her when she arrived and sat there nicely for her to administer them.  Mommy and I did not expect that to go so smoothly at all!!!  She had already improved vastly in just three eyedrop attempts through the evening!  She slept peacefully through a needy and loudly crying Molly into the midnight hour as well.

We don’t think we could have asked for this day to go this well.  Charlotte is truly back in a surrounding that she feels very comfortable in.  Even though she has been through some tough times here, the nurses and doctors are great at making our lives as livable as can be.  It is still another day in our current lives, so that means there are more damn tears coming from this guy.  But tonight’s tears aren’t like the last

time’s.  Tonight I feel there is a little hope in how this may turn out.  We didn’t get any new pieces of information that changes any of Charlotte’s prognosis numbers.  We didn’t get any positive or negative test results that clear up her situation or treatment path a bit.  But tonight I have my girls.  All of them in this “roomier” room.  And together we can either take this thing in stride or we can sit and bitch about it.  Not that I haven’t done more than my share of the latter on this website recently, but Charlotte apparently prefers to keep things moving.  Somehow she knew she needed to be here today and she was more ready for it than we were.  And I am going to take that as another good sign.

Thanks to all of you for continuing to stick with us.  I hope tomorrow brings us more good news, or at least more good times.

Posted November 26, 2010 by L. Elske in Uncategorized

November 23rd, 2010-Second bone marrow biopsy   14 comments

We didn’t have a lot to report yesterday.  Things are still going pretty well at home.  Charlotte is finding herself competing for Mommy’s attention (as one would expect), so she gets a little moody if Amy can’t pick her up or play with her at the exact moment she wants.  But overall, we can’t complain.

Amy’s parents have been with us for the last couple of days and that helps a great deal.  Her mom plans to spend another week or so with us while we transition from home to hospital for round three so we are very thankful for her help!

Tuesday the 23rd was a pretty busy day.  Charlotte’s bone marrow biopsy was scheduled for 7:30am so we had to get going right away this morning.  We loaded up the van with four of us and G&G Wags.  When we got there, Grandma E was waiting and Grandpa E was on his way as well.  We then found out the CT scan was the first on the schedule and that was at 9am so we were a little confused why we were there so early and wondered what time we would ever get home.  The CT scan was requested to see if the infection (or whatever was found) in the lungs on November 5th had cleared up or not.

The CT scan came and went without a hitch.  ***Although I would like to take the time to say to all of the parents out there:  If you have never held your son or daughter in your arms while they succumbed to the effects of anesthesia, then wheeled down the hall on the hospital bed while completely motionless and hooked to tubies, then please take a moment right now and say a little prayer of thanks.  It was not our first time doing it, and it won’t be the last, but it just pretty much sucks every time it happens.  As a parent, I don’t think I could feel more helpless.***

Dr Diamond came to see us briefly and mentioned that her CBC numbers were in and that she was pleased with them.  We were concerned because every one of them she gave us were lower or significantly lower than Charlotte’s tests last week.  Her white blood count was 3.7 (down from 5.1),  hemoblogin was 10.7 (from 11.2), her ANC was 1170 from 1220 and her platelets went from 416k to 250k.  So all of them seemed low to us and we didn’t like hearing them.  She also mentioned that she thought Charlotte was ready to start round three of chemo right away so she recommended we come in Wed or Friday and start that.  We were planning on coming back in on 12.1-12.3 so this was also alarming to us that she wants us there a week earlier than planned.  We left so Dr Diamond could do the lumbar puncture and bone marrow aspirate and also give Charlotte a standard quick dose of chemo in her spine.  They also gave her a flu shot while she was out.  Dr Diamond came and told us that we needed to get Molly registered in the UW system so that Dr Diamond can put through a request to have her blood tested to determine her HLA compatibility and see if her cord blood would be a good source of stem cells for Charlotte’s transplant.  Dr Diamond also said that the early results from the bone marrow aspirate would be ready in 45 minutes but she had other appointments that would occupy her time the rest of the morning so we would likely just go home and she would call us with the results.  We asked her about Charlotte’s declining CBC numbers and she was not worried at all and told us that her desire to start round three of chemo was a result of the fact that her numbers were high enough for treatment and the fact that Charlotte has AML- a rotten, aggressive form of leukemia-not that she is concerned about her outcome being affected negatively if we waited.  So Mommy and Grandma W took Molly up to the clinic to have her blood drawn and the rest of us went to watch Charlotte recover and wake up.  She was a little grumpy when she came to but wanted to walk the halls with us right away.  Of course, she was too wobbly on her feet to do any walking on her own, so the Grandpas, Grandma E walked around the short halls with me while I carried her from end to end.  Eventually, she was willing to sit in the play room and we waited for Amy and Grandma W to return.  We all left about 11:45 and headed home.

Dr Diamond’s call didn’t come until 3:30 so we were pretty concerned by then.  But she sounded pretty positive again as she gave us the early results.  Charlotte had about 4-5% leukemia cells show up in the aspirate (less than 5% is considered very good) but the official count won’t come back until tomorrow late afternoon.  The cytogenetic test results may not come back for at least a week or two.  The results of today’s CT scan showed to be the same as it looked on Nov. 5th so they aren’t positive about what is happening in her lungs.  But Dr Diamond wants to do another one in 4-6 weeks and we can look at that one and plan a course of action then.  She did confirm that we should plan on being readmitted for round three on Friday the 26th, unless something happens between now and then to cause Charlotte to be admitted early.  She said the results of Molly’s blood HLA Typing should be available Tuesday or Wed of next week so we might know if we will be doing a stem cell transplant in January as early as next week.  She also confirmed to us that it was also decided among the team of doctors that for Charlotte’s AML, the best chance of a complete recovery will be due to a successful bone marrow/stem cell transplant.  They do not think that 3-4 more rounds of chemo alone may be enough to keep Charlotte from a much more serious relapse.  We still consider the overall M7-AML prognosis numbers to be frightening low, but we can’t allow ourselves to think that Charlotte is just a part of a statistic somewhere.  And Dr Diamond is still confident that we caught her cancer early enough, and she has stayed very healthy throughout this process, so those are both good indicators that a transplant might be less risky and more successful.

Today was another very emotionally challenging day.  I don’t think that men in their mid 30s should be crying every damn day and I don’t think that parents should have to wonder what their lives may be like without one of their children, but this is the reality that we are living with daily.  With Charlotte’s diagnosis, we have come to realize that each day that goes by without bad news, is a good day.

Traditionally this is the time of the year for everyone to give thanks.  Amy and I are thankful for our wonderful families that have never left our physical or emotional sides since September 9th.  Without their love and support we may have already given up.  We are thankful for all of our hard working co-workers and friends at PDS and NESCO.  The Nov 4th benefit was such a success that Charlotte’s medical bills won’t be on the top of our worry list for a long time.  And Amy and I have been allowed to take time off while our friends at the jobs we leave behind have had to pick up the slack.  We are thankful for our beautiful healthy new daughter, Molly.  She has already given us inspiration to continue the fight so she can have a big sister to look up to.  We are also thankful for the staff of AFCH, who, through their quick actions and treatments, have already given us more time than we would have otherwise had with Charlotte.  But most of all, we are thankful for Charlotte, who still doesn’t know what is happening to her.  She still doesn’t understand that we could have lost her two months ago before she ever met Molly.  Of everyone involved in our lives over the last three months, the person who has consistently showed the most courage, every day, has been Charlotte.  Every day that we are with her brings another smile and another laugh and we can’t help but be thankful for that.

Love and peace to you all.  Have a happy and safe Thanksgiving.

Posted November 23, 2010 by L. Elske in Uncategorized

November 21, 2010   12 comments

Amy spent Saturday night in the hospital and I went back home to be with Charlotte.  As expected, it was a pretty restless night for the two in the hospital.  Molly didn’t keep Amy awake as often as the nurses, newspaper delivery person and morning rounds doctor (5:30am!) all did.  So when I called her Sunday morning to see how she was doing, she just responded tired.  I left Charlotte (who woke up a few times as well-I just ended up sleeping with her in her big girl bed since she was up most of the night anyway) with G&G Wags and went to see Amy and Molly.

When I arrived at the hospital, Amy just mentioned that we would be going home today.  She had seen her and Charlotte’s doctor and she was pleased with how we were all doing so she said there was no need to stay until Monday.  Plus, Dr. Diamond felt it would be easier to have Molly’s blood drawn for the HLA typing at UW Hospital rather than arranging it with St. Marys, so this was another push for us to leave.  Molly will now have her blood drawn on Tuesday while Charlotte has her bone marrow biopsy.  We left for Columbus after my Vikings were crushed by the local Division III prep team this afternoon (aka Packers for you non-football watchers).  Good thing I got to watch the debacle on St Mary’s top of the line 19″CRT tv complete with VCR.  Talk about dated digs.  I really would have never thought I would have missed AFCH, but everything else now seems to pale in comparison.

Getting back to Saturday evening and Charlotte’s first visit to meet Molly.  G&G Elske showed up early in the afternoon to meet Molly.  Then G&G Wags came later in the afternoon and they brought Charlotte with them.  I met them down in the lobby and Charlotte saw me and started running down the lengthy hall into my arms.  Talk about a heart melting moment!  I took them back to Amy’s room and Charlotte immediately jumped towards the bed wanting to be up with Mommy and Molly.  Within seconds she was demanding to hold her and and we couldn’t pass that up!  She was a great big sister.  She was careful holding Molly, and so gentle while touching her “little baby nose”  and “tiny baby mouth”.  She was really happy to be with her and Mommy again.  She would alternate saying “missed you” to Mommy and “she likes me” about Molly.  We couldn’t have asked her to respond any sweeter.

And this reaction was the same one we received when we arrived home tonight.  Charlotte met Mommy and Molly at the door and again demanded to hold Molly before Mommy could even put the car seat down.  And her love for Molly grew even more when Molly gave Charlotte a gift of a toy microwave.  Charlotte was thrilled!!!  She was so patient all night long when Mommy needed to feed Molly (of course it helped to have Daddy and the grandparents doting on her).  But as soon as Molly was finished eating, Charlotte made sure that Daddy took her so that she could have a a turn cuddling on Mommy’s nap.

We are excited for our first official day at home tomorrow as a family of four, but we’ll be spoiled for awhile as G’ma Wags will be with us for the next 2 weeks.  We are hoping for a quiet day tomorrow and a return to our “slow news days” once again.

 

 

Posted November 22, 2010 by L. Elske in Uncategorized