History

Journal History

Tuesday, March 12, 2002 at 11:27 PM (CST)

Wow! It's been a long time since I wrote an update. Sorry! Mallory is doing just fine. She is completing her kindergarten year in school and has done well.

Her last scans and bone marrow aspiration in January showed no evidence of disease. We were thinking of starting on a new vaccine therapy since the anti-id shut down last fall. After much thinking and praying, I have decided to take her off of preventative treatment for now. I just want her to be able to lead a normal life for the first time in the past three years. We will still go in for blood draws and office visits every six weeks and scans every four to six months. It was a difficult trial to turn down but I think it's the best decision for us right now.

Take care and I will update periodically.

Liz Purkis

Wednesday, October 10, 2001 at 11:47 PM (CDT)

As always, I apologize for the amount of time that has passed since I updated Mallory's page. As I stated in the last entry, she did start kindergarten and we have been so proud of her. She's a little stinker to get up and moving in the mornings but once we get over that, she does very well. She is really enjoying it.

The past few weeks have been rather rough for us. She had her 3 month scans on the 17th of Sept. An x-ray showed a small, circular "spot" at the bottom of her left femur, just above her knee. Her doc was very concerned. She ordered a bone marrow aspiration (which she hasn't had in a year) and an MIBG scan. The aspiration showed no evidence of neuroblatoma and neither did the MIBG. This was her first MIBG so we are unsure whether there really is something there and she just did not uptake the isotope. Or maybe it is just something other than nb. Her doctor is more hopeful now but still wants to determine what the spot is. She is having an MRI tomorrow. I have been doing quite a bit of praying and have found enormous peace. I am hopeful that this was just one of the fluky spots they see and that she is fine. I will write an update as soon as we get the final results.

Thanks for stopping by.

Warmest regards-
Liz Purkis

Wednesday, June 27, 2001 at 10:07 AM (CDT)

Dear Friends-

Mallory is having a wonderful summer. We spend almost every day at the pool. She is getting quite the little tan.

She had CT and bone scans done at the first of June. There is still no evidence of any neuroblastoma. She just received injection #10 of the anti-id vaccine therapy and has 17 more to go. YUCK! They seem to get more and more difficult with each one. We are praying that the pain and swelling will decrease in the future.

She will be starting kindergarten in August. She is so excited! I'm sure I will be a wreck on her first day yet it is such a milestone for her. Needless to say, I'm very proud of her.

Thank you for checking up on her. And, as always, thanks for your continued prayers.

Warmest wishes-
The Purkis Family

Wednesday, April 11, 2001 at 11:10 AM (CDT)

Dear Friends and Family-

Mallory is continuing to do great. She just received the 8th injection of the anti-id vaccine yesterday. She is getting use to these injections despite the pain. She only requires us to cover her eyes now. It's so cute. She does not like to use the Emla cream or freeze spray to help numb the area. She just likes to get it over with. She is so brave!

She will be having her scans done in the middle of May. I will be sure to post an update as soon as we learn of the results. Please keep her in your prayers.

Have a great day and thanks for stopping by our page.

Love-
The Purkis'

Tuesday, February 27, 2001 at 02:13 PM (CST)

Dear Friends-

I know that it's been a little while since I wrote an update. All has been very quiet around here so there's not much to say. Mallory continues to do so well. We couldn't ask for anything more. She will be going in next week for her 7th injection of the anti-id vaccine. She is not due to have another set of scans until May. Gee, I hope my nerves can wait that long. I am use to her having her scans every 3 months. This time we will be waiting 5 months. Yet I know that the Lord will bring me the patience and peace of knowing that she is fine.

Please join us in continuing to pray for Mallory and all the other children fighting this disease. Thank you for visiting her site. Take care and God bless you.

The Purkis Family

Thursday, January 18, 2001 at 05:18 PM (CST)

We got Mallory scan results back last week. Dr. Strother says that everything looks great! We are just thrilled. She just received injection #5 of the anti-id vaccine. She will go back at the beginning of February for her 6th injection.

She is doing great and growing leaps and bounds. She is now weighing 44 lbs. at the age of 4 1/2. She's only 1 lb. lighter than her older sister now. As you can tell by her recent pictures that her hair is growing just beautifully. It is actually much longer than it appears due to how curly it is. I am able to pull it all up into a ponytail now with out having to use tons of hairspray. She loves having long hair again. We are always going to the accessory shops to find cool new hairbows and rubberbands.

Thank you for visiting her site and checking on her. We ask that you please continue to keep her in your prayers as well as all the other children battling with neuroblastoma. It seems to be growing more and more common. It breaks my heart to know how much these children and their families are having to suffer with this diagnosis. I pray that God will show each of them mercy and wrap them in his love.

I wish you all the best and will update again soon.

Warmest Wishes-
Liz Purkis

P.S. I will add some new pictures soon. Please come back to check them out.

Wednesday, December 20, 2000 at 11:27 AM (CST)

Please accept my apology for taking so long for an update. Actually, things have been pretty quiet. Mallory will be going for her 3 month CT and bone scan on 12/27. As always, I'm a little nervous. She has been doing great so I don't think that there is really anything to worry about. But it is so hard to let my guard down knowing how "sneaky" neuroblastoma can be. She will be receiving injection #5 of the anti-id vaccine therapy on 1/2/01. This will begin the monthly injection schedule. She has been a little trooper so far. I hope that she will continue to take it all in stride and that the pain will lessen in time.

We are ever thankful that we have her for another Christmas again. My heart is saddened for all of the families that have lost their little ones over the past year to this dreaded disease. Please join me in praying that they will have the strength to make it through the holidays.

I will post an update on her scan results late next week. We wish you all a very Merry Christmas and a Happy New Year.

Saturday, November 11, 2000 at 09:48 PM (CST)

Mallory started on a trial vaccine study a couple of weeks ago. This treatment will last for at least one year. She will be receiving a series of injections that will hopefully produce antibodies in her system that will fight off any neuroblastoma that might try to come back. Before we started
on the study, she had a bone marrow aspiration performed as standard protocol. They not only checked the aspiration here but it was also sent to a lab in California with very sensitive testing techniques. We were told when her sample was sent that this lab almost always find some neuroblastoma. Well I am happy to report that the test showed absolutely no neuroblastoma cells within her marrow!!!! We are so excited. I spoke with her doctors today regarding the results. They informed us that they will not have to check Mallory's bone marrow every three (3) months like it has been done previously. She will continue to have CT scans and bone scans but the aspirations are not necessary now. The aspiration is taken from her tail bone and as you can imagine, although she is sedated, it is quite painful. Her hiney was beginning to look like a pin cushion. This is a big milestone for Mallory. Although she is not old enough to understand all of it, she will be happy to know that she doesn't have to have any more
"booty pokes!"

More good news is that 30 children are enrolled in this vaccine study. Some of the children have already finished the first year of the study. The results from this look very promising and the doctors have seen better outcomes than they expected. I should be receiving more info within the next couple of weeks. I was very hesitant to start her on this study due to the painful injections. After much praying and talking with the doctors, I agreed to enroll her. Now with this new information, I am feeling much better about my decision. Please know that Mallory's doctors are very optomistic about her future and prognosis. I would love to be as carefree as they seem to be but, as her mother, I still have to worry everyday.
I just wanted to share the good news. We are feeling even more blessed as the good news just keeps on coming.

Sunday, October 08, 2000 at 10:21 PM (CDT)

Please pardon the time that has passed since my last entry. Mallory has continued to do extremely well. She had a bone marrow aspiration and biopsy performed on the 29th of September. All tests show that her bone marrow is still clear. We are rejoicing that she has still managed to stay disease free. We have her CT scan and bone scan scheduled for October 12. I will post these results as soon as I get them. Please pray that the Lord will bless us even more with these tests being clear also.

We went to Disney World in mid-September for Mallory's Make-A-Wish. We had the most wonderful time. Please check out the new picture in the photo album page. It is our photo with Mickey and Minnie. If your child has a chance to make a wish and they choose Disney, they will love it. The Give Kids the World village is just phenominal. It is amazing all the things they do for these children.

Thank you for visiting our page. Please be sure to sign our guestbook so that we know you were here.

Have a great day!

Tuesday, August 22, 2000 at 05:40 PM (CDT)

We visited with Mallory's doctors today for lab work and office visit. Her blood counts are great! They are all within the normal range and holding steady. She is gaining weight like a champ. She has gained about 3 lbs. within the last couple of months. She is only a few pounds lighter than her 5 1/2 year old sister. We are just so excited about how well she is doing. We could not ask for any better news.

We discussed vaccine therapy options with the doctors. We will be starting her on the Anti-Idiotype Vaccine Therapy study in the middle of September. This is a year long therapy with injections twice a month for the first two months and an injection once a month for the following ten months. This therapy is still in the study phase but the docs have seen good results in other children. We are praying that it will help keep Mallory disease free for many years to come.

Tuesday, August 08, 2000 at 11:36 AM (CDT)

We are celebrating again! Mallory's bone scan and CT scan came back all clear. There is no evidence of neuroblastoma anywhere. We are so thrilled! She is now finishing up her last round of accutane. We will be meeting with her doctors at the end of the month to discuss gene therapy options. We are hoping to get started with a therapy in September. Thank you all for your prayers and support. We know that God has placed his hand on her and richly blessed us all.

Tuesday, July 18, 2000 at 10:28 PM (CDT)

We are so excited to announce that Mallory's bone marrow is still disease free! She has been in remission now for almost 8 months. We pray that she will continue to have many more months in remission. She will be having her diagnostic scans next Tuesday. Please pray that these scans will be clear also. Thank you and God bless you!

Thu Jul 13 14:56:32 CST 2000

Mallory is still doing wonderfully. We have just celebrated her 4th birthday and had a great time. She had a bone marrow aspiration and biopsy done this past Monday, the 10th, and her scans scheduled for July 25th. We should have all tests results back shortly after the scans. Her blood counts are great. She is living her life as a normal little girl and we couldn't be more thrilled. We ask that you still continue to pray for her and her continued remission.

Sunday, June 11, 2000 at 11:10 PM (CDT)

Mallory was declared disease-free on December 27, 1999. She is currently on retnoic acid treatments and eagerly awaiting to begin gene therapy. She is enjoying the normal life of an (almost) four year old.

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