Archive of 2005 Lates Updates

2005 Updates:

Link to 2006 Updates

December 31, 2005

We received a late Christmas present Thursday Dec 29. Robin took Mallory to the local hospital, St. Mary's, for blood work to check her ANC counts and they were 6,346. This is fantastic news and all but guarantees her return to school at Sharon next Wednesday (4th)!!! What is really amazing is that her counts have gone from 2,200 Dec 15 to 6,346 Dec 29 after having Vincristine and Methotrexate on the 15th that generally cause her counts to drop. Robin really feels that this is an indication that she's in 'maintenance' and is doing well.

Mrs. Eble, who has been home schooling Mallory for the last year, will be her teacher at school also. She feels that they will be able to start Mallory in school full time and see how it goes. Mrs. Eble has even set up an area for Mal to lie down if she gets tired in the room so she can rest without missing anything. Mallory is so excited about being back in school.

This is great news and like I said at the beginning is like a late Christmas present from God. Thank you again for all your support and prayers! There's a long way to go, but the last year has seen continued improvement.

Jeff and Dean

December 20, 2005

Mallory went to Kosair's Children's Hospital in Louisville Thursday Dec 15 for her monthly treatment. The great news was that her ANC counts were 2,200. That is down a little from the 2,800 last month, but the doctors do not seem worried. While there, she had her lumbar puncture where they extract cells for analysis and while they are in her spine they give her a dose of Methotrexate. Additionally, they gave her Vincristine through her port.

She still feels good and is anxiously looking forward to Santa Claus's arrival in a few days.

The doctors feel that if her ANC counts stay up that she will probably be able to go back to school after the Christmas Holidays, let's hope and pray for that.

Thanks for all your prayers, support and help. We wish all a very Merry Christmas and a Happy New Year.

Jeff and Dean

November 18, 2005

Well, lately I've been sending out updates with the good news / bad news theme or maybe the yes, but... However, today's theme is all good news. Mal went to Doctor Ahuja, her oncologist, at Kosair's in Louisville today and her ANC counts were up to 2,800. He was very pleased and said she could start back to school in January if her counts remain stable. Robin and Mal were ecstatic! She was given the Vincristine (Chemotherapy drug) today and other than that, it was just a checkup. She will start back up on another round of steroids tonight. I think most of you know that her hair began falling out a couple of weeks ago and Robin asked Dr. Ahuja if that was normal and he said it was and not to worry. It has since started to grow back in.

Mal's next appointment is December 15 and will have her spinal tap done in addition to the chemotherapy drugs.

Mal and Robin were very happy with today's appointment.

God bless all of you and we wish you a very happy and healthy Thanksgiving.

Jeff and Dean

November 4, 2005

Hi all,

It's been a while since I sent out an update, which is relatively good news. Mallory has recovered from her tethered cord surgery and you can already begin to tell a difference in her agility and energy level. She has only been back to Kosair's once since the surgery and that was for the post-surgical 10 day checkup and the doctor said she was doing fine. She has an appointment next Thursday for another follow up with the back surgeon and then for her monthly chemotherapy.

One bit of bad news is that her ANC counts have continued to drop. They went down 2,000 each time that blood work was done since the surgery and as of last week, they were about 1,450. The level of concern elevates when they drop below 1,000.

She continues her home schooling and is really doing well. She hopes to return to her elementary school as soon as possible, but the doctors say that her ANC counts have to stabilize for 2 months before that's possible. Based on the above, it looks like it will be after the holidays.

Sam and Mal went "trick or treating" last Monday night and had a ball. Mal really surprised us by how well she did. She went completely around the neighborhood and was out about an hour and a half. Came home with a really big bag of candy, she was really happy about that! Attached is a picture of the two of them. Mal was a 'vampiress' and Sam was 'double trouble'.

There was a very nice article in the "Evansville Courier & Press" this morning. Below is the link that you can click on (or copy and paste into your browser). They really did a good job of telling the story.

CourierPress: Warrick County (copy preserved here on Mallory's site-Webmaster)

I think most of you know, but Dean (with Mal's help on one of them) painted 4 Christmas cards that we will be selling in addition to the 5 notecards. We picked them up from the printer the other day and as soon as I can, I'll send out the images to all of you. We're selling 12 Christmas cards for $10.00. We still have plenty of the notecards available if anyone wants one, just let us know on either one.

Well, I suppose that you are all up to date. After next weeks 2 appointments I will send out another update.

Keep up the prayers, they are still needed and have made a difference.

God bless all of you!

Jeff and Dean

October 4, 2005

Mallory and Robin left Kosair's about 1:00 pm Monday October 3 for home. She did not have a fever for over 24 hours and was having little or no pain. The doctor's just advised her to take it easy for the next week or so. Assuming that everything goes well, she should be able to return to school in November, probably half days at the beginning until she rebuilds her strength.

October 2, 2005

Things are better tonight. We left there about 11:00 to come back to my sister's. Robin and Stumpy were very concerned over the lack of understanding of the needs of a cancer patient that the staff had on the floor that they were on and requested that Mal be transferred up to the 7th Floor West section that deals exclusively with cancer patients. What a relief in Mallory's eyes and demeanor when we arrived there. It was like night and day. She has total trust and confidence in them (and us too) and it shows.

They took out the catheter around 8:00 tonight (very painful for Mal) and around 11:30 Robin called to say that she "Pee'd on her own" and it didn't hurt. That's one great thing. Next is to have a BM. She began running a low grade fever, 99.2-99.7 and that's a minor concern. Once she has a BM and fever is gone, she should be able to go home.

Jeff

October 1, 2005

Just wanted to send out a quick update. Dean and I are getting ready to go to hospital. As of last night when we left, Mal was doing fine and was feeling good and in a real good mood. However, about 10:00 she started feeling a lot of pain, more than she said she has ever had, and it lasted till about 1:00. The nurses called in various doctors for consult and ultimately decided that she might have a blockage in her bowels. They are going to have an x-ray this AM to verify. Robin said those 3 hours were the worst she has gone through with Mal. Prior to that, the thought was that she might be able to go home this evening, but now ????????

The plan from Dr. Moriarty, who did the back surgery, was to elevate her to 30 degrees this morning (which they've done) and to 90 degrees this afternoon if that went OK. Late this afternoon they were going to have her up and walking and if that was OK, they'd discharge her. We'll just have to see given the events of last night and what the final diagnosis is and what treatment is required.

We'll be heading over in a few minutes, but won't be able to send an update out til later this afternoon.

Jeff and Dean

September 29, 2005

Mallory's surgery today was a huge success. She was taken back to the preparation area about 7:30 and they started her on a light sedation. We were able to go say good bye and good luck to her (boy was she loopy at that point) and they took her to the operating room about 8:30. Dr. Moriarty stopped by just before they took her back and talked with Robin and Stumpy.

She went to recovery about 11:30 am. Dr. Moriarty came to talk to R & S and told them that everything went very well. He did have to go into the spine through bone instead of between vertebrae as he hoped since the multiple spinal aspirations had caused it to be scarred and inflamed. The tethered cord or appendage was larger than he expected (I think he said it was huge), but it did not have any nerves in it so it made it very easy to just snip it.

Mal came to her room (429) about 2:30 after waking up in recovery. She was still pretty heavily sedated. They want to keep her as still as possible for the first 24 hours, then will begin turning her on her side and back. Dr. said that "normal" recovery/discharge is about 2 days, but every child goes through it differently.

Thanks for all your thoughts and prayers! They helped to make the surgery a resounding success.

Jeff and Dean

September 23, 2005

We had a bit of a scare this week, but it turned out to be some good news. Mal and Robin were riding their bikes on Wednesday and during the ride, Mal felt sick and began throwing up. Robin said her lips turned blue and she panicked. As soon as she got home, Robin called the doctors at Kosair and they referred Mal to a local doctor who took blood and examined her. He felt it was just an issue that her glucose level was low and maybe a slight case of hypoglycemia. Now the good news, the results of the blood tests showed Mal's ANC counts were 7,000!!!!!! That's the highest they have been and is great news.

As a result of that, Mallory's back surgery next Thursday at Kosair's Children's Hospital in Louisville is a go.

Thanks for all your prayers and good thoughts!

Jeff and Dean

September 15, 2005

More Great News!!! Mallory’s counts this morning are 2,500!! That is fantastic!! Although they are down from the 4,700 last Friday, that was expected as they were artificially driven up by the Neupogen. The Doctor’s were very pleased with today’s results. Based on that they have officially moved Mallory into maintenance! What this means is that from today, she has two (2) years more therapy.

Here’s the plan:

Surgery on tethered cord in her back will be on September 29 as previously scheduled.
Mallory will have blood work done in Evansville every other week.
She will go to Kosair’s Children Hospital in Louisville once a month for check-up and receive Vincristine through an IV.
Spinal taps will be done every three (3) months instead of monthly.
She will take oral chemotherapy drugs at home.
Hopefully after she recovers from the back surgery and her counts stay up, she can resume attending school.

All the prayers you have said have made a difference! Thanks to all for your thoughts, prayers and help.

Jeff and Dean

September 9, 2005

God is good! Today the weekly after blood work phone call was better than anyone ever hoped for--her ANC is up to 4,752!!!!!!!!!! It is absolutely unbelievable--maybe she has truly turned a corner! The doctor's warned that it could go down next week, but to go from 0 to almost 5,000 is the most wonderful news any of us has heard in months. We have not been able to stop smiling all day. Mallory is beside herself, as you can imagine--we all are.

The lows have been horrible, but this high is just the best! The nurse said to bring her up next week for chemo and not to even bother with blood work before she comes. If this keeps up there should be no concern about her having surgery on the 29th.

All our prayers are working, thank you all for your concern and continued support.

Please keep praying!

September 6, 2005

Just heard from Robin (mom), some good news, the Neupogen did it's work and Mallory's counts are up to 512. Her white cell count was up to 6.4 which is within the normal range of 4-13; this shows that the antibiotics that she is on are working. The doctor did say that her bone marrow is working, which was a concern. He wants another check of her blood work this Friday, but they will do that here at St. Mary's.

Since Mal is feeling good and there is no fever, they are going to release her today to come home. Stumpy is on the way now to pick them up.

Current plans are to still continue with the scheduled surgery on her back on Sept. 29 to repair the tethered cord.

Thanks for all your thoughts and prayers!

September 5, 2005

As you know, Mallory's ANC counts have been low over the last month preventing her from starting school this year. Saturday, September 3, she was running a fever of 101 and after discussion with the doctors at Kosair's in Louisville, her parents took Mal to be admitted there. They were concerned that the fever might be an indication of an infection that needed to be treated quickly and aggressively. They all got there mid afternoon Saturday.

On Saturday, her ANC counts were under 100 and they started treating the fever. Sunday, her ANC counts were around 35 and they decided to give her a shot of Neupogen which gives her a boost in her counts. This morning her ANC counts were 76. They plan to give her another dose of Neupogen today. Her fever is gone, so that is good news. The doctors said that Robin should plan on being there for a 'few' days. We'll just have to see how quickly the Neupogen affects her counts.

The doctors still feel that the drop in her ANC counts over the last month are as a result of a dose of Methotrexate that she received on July 14. It was a larger dose than she had been getting.

Her Dad is coming home today and her Mom will stay with her.

As her ANC counts are so low and she is so susceptible to infection, visitors are not recommended at this time. If the go up in the next few days, then I'm sure she'd like some company. Mal is in room 745 at Kosair's.

Robin said that she is feeling well and he mood is good. There is a PC there and if you want to send her an email, she can read it there and that will help her spirits. Mallory's email address is: wheeler_mallory@yahoo.com

Please have a safe and happy holiday today and remember Mal in your prayers.

September 1, 2005

Well, it seems as if there just isn't any good news lately. Mal's ANC counts went down rather significantly this week. Last week they were in the low 800's, but yesterday's blood work determined that they were 260. At that level, she still can not go to school. The doctors at Kosair's in Louisville feel that there is one of her medications that might be artificially affecting the counts and will suspend it for the week. They will check again early next week. Pray for better news.

August 24, 2005

Just a quick one, Mal's counts today actually went down a little. They were in the low 800's. She still can not go to school at that level. They will be checking again early next week. Pray for better news.

August 22, 2005

Still not the best news. Mallory's counts today were 833, not enough to be able to have her treatment at Kosair's that was scheduled for this Thursday and still not enough to be able to go back to school.

However, she is scheduled for retesting Wednesday and Robin is to stop her oral chemotherapy drug to see the effect. If her counts are higher, then she'll go on to Kosair's as originally planned. Let's hope and pray that they are higher!

August 16th, 2005

Still not the best news. Mallory's counts today were 816, not enough to be able to have her treatment at Kosair's that was scheduled for this Thursday and not enough to be able to go back to school. She is scheduled for retesting next Monday. Let's hope and pray that they are higher!

Thanks for your thoughts and prayers.

August 15, 2005

Well, it has not been the best of times. Last I wrote, we sent Mallory off to Kosair's Children's Hospitals Camp Quality on July 31 and was to have been there through August 5. She became homesick on Tuesday the 2nd and her parents felt it best to go get her. At 9, it was a pretty gutsy decision to give it a go and Mal has said she wants to try it again next year.

Over the weekend of the 6th/7th, Robin (mother) took Mal and sister Samantha up to Indianapolis to visit Aunt Amy and help make bracelets that they are selling to help raise funds to help with medical bills. Mal felt pretty good, but Robin said she could 'tell' that something was not quite right. A mothers intuition......

Anyway, on Monday the 8th, Mal was scheduled for blood work to ensure her counts were high enough to allow her weekly treatment on the 10th. Her ANC count had dropped to 500. That's just at the borderline of needing immediate hospitalization. They told Robin to keep Mal home, away from crowds and any possibility of infection/germs and that she could not start school as planned on the 11th. Mal was devastated, she had built up her hopes to be able to start school that this news was hard to take. Her new 3rd grade teacher called on Tuesday and said: "Robin, the room is clean and there is no one here, why don't you bring Mal over to introduce her to me, let her see the room and put her stuff in her locker". Robin did and it was a great lift for Mal.

Time line for this week is that additional blood work is due on Tuesday the 16th and if counts are high enough, she'll go to Kosairs on Thursday for treatment. Then follow-up blood work on Monday the 22nd and if her ANC counts are high enough, she'll be able to start school on the 23d.

So, that's all I know for now, looks like more prayers are needed to help Mal through this.

July 31, 2005

Today is Mal's birthday and we wanted to surprise her in Louisville as she left for her cancer survivor summer camp, Camp Quality, where she'll be next week. They left from Kosair's around 1:15pm and we were there to surprise her and send her off on her fun week. It was great seeing the expression on her face when she saw us for the first time and it made for a nice birthday present for her.

Camp Quality is a camp that is run by Kosair's and is staffed by doctors and nurses on site. Each attendee has a companion assigned to them and these companions/counselor's are past attendees and are cancer survivors also. Mallory's companion is Sara and Mallory really liked her. Sara said this is her 6th camp and she is a junior at UK.

We are sure that she will enjoy her week. Her friend 'Gabby' is going with her and they will be bunk mates.

Mallory continues to do well. She has not been back to Kosair's for treatment since the last update July 15. Her next scheduled appointment is August 10.

Attached are a few pictures of the day. I'll get some more up on Yahoo Photo's in a few days.

I'll send out an update next weekend to let you know how her week was.

We drove home after that and started catching up.

Thanks for all the prayers, keep them up, they are working!

July 15, 2005

Fantastic news!!!! Robin, Mallory and Dean went to Louisville, KY Wednesday night, stayed with Jeff's sister, Jean, and then went to Kosair Children's Hospital Thursday morning for spinal, et al., and got GREAT NEWS!!!!!!!!!!!!! Mallory will be in full maintenance by August 10 and as long as her ANC counts stay up has NO RESTRICTIONS. She can swim in public pools, play golf, go to where ever she wants and will be able to begin 3rd grade on Aug 11! We were just blown away--talk about prayers being answered!!!!

The maintenance phase will last two more years barring any other complications. She only has to go to Kosair Children's Hospital in Louisville once a month for vincristine and once every three months for a spinal tap and direct spinal injections. She still will be taking 3 other chemotherapy drugs daily or weekly orally at home. The steroids will continue to be given 5 days each month, but that's better than what it has been.

She will probably be having the tethered cord surgery on her back in late September now that she can go three months between spinals. A year ago that would all sound so horrible, yesterday it was a gift. We cried, laughed, even screamed all the way home.

Thank you for all your prayers--we have been blessed with wonderful family and friends support.

God is good!

June 28, 2005

It's been a couple of weeks and I thought it's time for an update. Mallory has had some troubles over the last couple of weeks with the chemotherapy drugs that she's taking orally at home. She's had some bad nights with anxiety and pain. It's not every night, but seems to run in cycles of every two or three days.

She has not been back to Kosair's for treatment since the last update, however, she went back today (June 27) for an appointment with a neurologist to discuss the tethered cord in her lower back. He felt that it definitely needs to be addressed and she will feel significantly better after the surgery. The next step is an appointment July 19 with the surgeon to review the case and set a date for the surgery. It's most likely going to be between mid-September and mid-October. They need to wait that long since they can not do it until three months after her last spinal tap which should be July 14.

Here's what is happening in her life:

=> Tue, Wed and Thu of this week she is homeschooling with the goal of starting back in mid-August with her class at Sharon Elementary in Newburgh, IN.
=> She does not need to go back to Kosair's in Louisville later this week. They advised that blood work can be done locally to check how her levels are. She will continue to take her oral chemo drugs daily.
=> Her uncle Brian and aunt Sally and cousin Victoria are arriving Friday from Seattle, WA for a 5 day visit.
=> July 14 will be the next trip to Kosair's for a spinal tap and injection of Vincristine and Methotrexate.
=> July 31 she will be going to a "kids with Cancer" summer camp staffed by nurses and doctors with the counselors being cancer survivors. She is really looking forward to that. More later.

Thanks for all your thoughts and prayers.

Jeff and Dean

June 1, 2005

Mal's last treatment was May 29 and it went well. They told Stumpy then that she would come back for treatment on June 3 and if all went well they would be moving Mallory into "Interim Maintenance" whereby she'd only go monthly to Kosair's instead of weekly. She'd still be taking chemotherapy drugs orally throughout the month and having blood work done in Evansville weekly to monitor her levels.