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Tuesday, March 17, 2009 5:16 PM CDT
Happy St. Patrick's Day!!! McKayla had her third year anniversay OT appt yesterday. She is still in remission. We get to go every six months now. She still has some kidney problems and difficulty with language arts. God Bless!
Tuesday, October 21, 2008 11:11 AM CDT
Hi,
McKayla still has a UTI infection. It is so hard for her to get rid of these! Her grandpa is still not doing well although we have had him moved and the doctors are trying their best to treat him. Please keep him in your prayers. His website is www.caringbridge.org/visit/jerrysmith.
Friday, October 17, 2008 7:37 PM CDT
Hi everyone,
McKayla is doing well although she says school is hard this year. She has finished her antibiotics. She is very concerned about her grandpa. He was just diagnosed with stage IV stomach cancer. Please visit his webpage and sign his guestbook. www.caringbridge.org/visit/jerrysmith. Please keep him in your prayers! God Bless!
Thursday, September 18, 2008 12:32 AM CDT
Hi everyone!
McKayla is playing softball this fall and is really enjoying it so far. The girls are doing well in school, both are GATE students and Kasey is on student council as well as an editor for the school newspaper.
Wednesday, August 27, 2008 4:32 PM CDT
Hi Everyone,
Sorry I haven't updated in a while. McKayla is doing well and sees the doctor only every 4 months now. She has been doing gymnastics this summer. She started 3rd grade on Monday. Her big sister, Kasey, is in 8th grade now. God Bless!
Monday, September 10, 2007 4:29 PM CDT
OT
McKayla is doing well. She did have a virus that she contracted on the third day of school which made her miss two days already. She seems to be recovering though. She loves math. She is looking forward to the school year and enjoying learning bible verses at Sunday School.
Kasey is a big middle schooler and thinks she is so cool. She and McKayla are so funny this year trying to look fashionable. Kasey didn't care at all last year so this is a big change for her. She is excelling in Language Arts but hasn't quite adjusted to her new schedule at school. She gets very tired.
I caught McKayla's cold and right now we are at CHLA so I am staying away from the kids. We are just waiting for the doctor to come in. There is a delay because we have HMO insurance and in their wisdom have me drive to one city for labs the previous week which makes me miss a 1/2 day of work and then down into L.A. for her check up which is a full day off work. But the labs never seem to arrive. We after a 2.5 hour drive I hope they find her labs soon. Anyway, God Bless Everyone and thanks for checking in!!!
Wednesday, August 29, 2007 12:51 AM CDT
OT
Hi Everyone,
After a long summer, the girls are back in school. They started on Monday. Our summer wasn't the greatest as McKayla got bit by an unvaccinated dog during a two hour visit with her father and we had to wait two weeks to find out whether or not she would have to have rabies treatment. As it was, she was infected by the next day and had to have two rounds of antibiotics to clear it up.
Both girls are very happy to be back in school. They both love to learn and are academically bright. Kasey is in middle school this year and McKayla in 2nd grade.
Better go for now, God Bless!!!
Friday, June 22, 2007 6:13 PM CDT
OT
Hi Everyone!!! McKayla had her doctor appt on June 11th and blood work was good. She developed a rash again and this time it covers about 40% of her body. I have come to the conclusion that this is not an bacterial or fungal infection since it clears up when it wants to and not with the ointments the doctors have given. The only one that has helped is an anti inflammatory. McKayla finished first grade, but still is having trouble reading. She is doing well in math. She received an award for academic achievement in Math. Kasey graduated from 6th grade and received a gold President's award for academic excellence!
The girls are in a dance recital next weekend and just finished the play Honk! Summer is here and I am so grateful!!! We all need the more fun and relaxation!!!
Thanks for checking in on McKayla and have a great summer!!!
Friday, April 27, 2007 5:07 PM CDT
OT!!!
Hi everyone,
Kasey just finished science camp and had a blast! The girls and I are having a hard time with flus, cold and allergies this year. McKayla was sick this week with fever and coughing. The doctor says it is mostly sinus. They are both doing well in school and dance. They are also in a play!
Hope everyone is doing well. My father and grandmother are improving. Thanks so much for all of the prayers.
God Bless!
Friday, April 20, 2007 3:01 PM CDT
LTM
Hi Everyone! McKayla is doing pretty well just some pain again in her hips and legs. It seems to get worse when it is cold and makes it hard for her to walk. Hopefully the weather will warm up and she will feel better!
God Bless!
Tuesday, March 20, 2007 4:33 PM CDT
LTM
Thank you Angel Carole for the gift! McKayla was so excited to receive it!
McKayla has been off treatment almost a whole year!!! But she has been keeping me busy anyway with a broken wrist and abscessed finger! She broke her wrist by falling down in the house on the carpet. She only had to wear her cast three weeks because of the type of fracture she had. My friend, Nora, said "You need to make up a story 'cause that is too boring!" McKayla had fun with her pink cast and everyone signed it!!! My dad and grandma both were in the hospital. My dad with a TIA and my grandma fell down and suffered some head injuries. She hasn't been able to go home yet, but we are praying for her to come home soon. She was so bruised and cut up from the fall in addition to getting pneumonia. My dad also is having some ongoing health problems. God Bless all of you!!!
Monday, January 22, 2007 6:24 PM CST
OT!
Hi everyone. I am very sad that another child has earned their angel wings. Please if you get a chance offer condolences to their family at WWW.caringbridge.org/in/babydonovan.
McKayla is doing pretty well. She seems to be clear of the resistant UTI infection, but still is coming home with bladder problems from her father's house. I don't know what is causing this, but she really doesn't feel well. She had her check up and her counts were normal. Nine Months OT!
God Bless!
Thursday, January 11, 2007 6:54 PM CST
The marathon was very exciting. There were 13,000 people! First of all, it was warm by the time we started so I didn't need my gloves and long sleeved tee! I was so happy because as you know those early morning trainings are during the coldest part of the day. We lined up and everyone cheered us on. I felt prepared as I brought six speed gels, six packs of salt, my inhaler, carmex, and my cell phone. There were plenty of water stops along the way so I was didn't bring any with me. I did use body glide and am not sure if it helped or not. I used my IPOD with some inspirational music. The announcer told everyone to cheer for the purple people! (That was us!) We took off and the first 9 or so miles 1/2 and full marathoners ran together. I felt strong and things were going well. It was a beautiful day. We got to a point where a lady on a loud speaker was saying, "Full marathoners to the left and 1/2 to the right." I veered to the left and was the only one who did in the group of people I had been running with. I looked in front of me and couldn't see anyone at first. Then I saw a lady and sped up thinking I would run with her. She turned out to be a spectator! I ran alone for a good 15 minutes before I came upon a pocket of runners. I was doing great until around mile 14. I started cramping in my legs pretty bad so I started walking. Could have been something with no enough salt not sure. I walked as fast as I could to try to keep time and met a very nice lady who was also walking at the time. She is 67 and this was her third time doing the full OC marathon. We walked several miles together at mile 18 I developed really big blisters on the balls of my feet and in between my toes. The cramping continued and I was in pain from the blisters but I wasn't going to stop I was determined to make it. I started feeling better around mile 22 and went back to running 3 and walking 1 minute intervals. We got to the .2 and I was so excited but there was one more incline-an overpass! I pushed up it and when I came over it at the base of the hill was Patrick, our coach and some other TNT people. They rooted for me and I felt great I ran faster and made it around the corner and to the finish line!!! I would definitely do it again. It is really wonderful to have the TNT staff and volunteers cheering and encouraging you! The most amazing thing is I didn't have muscle soreness!!! I do still have the blisters I am contending with and some stomach cramping after the marathon. The medal is very nice and I feel so proud to have completed it!!!!
Tuesday, November 7, 2006 5:25 PM CST
LTM
Hi Everyone! Thank you to everyone who came to McKayla's birthday party at Chuck E. Cheese. She had a grand time with all of her friends!!! Her birthday is on November 22 but since the next couple of weekends are holiday ones McKayla and I decided to have it early!!! She seems to be doing pretty well but did suffer from some heat exhaustion yesterday at school and had to come home early.
Fundraising is going pretty well I still need to raise about $400 more. If interested in helping with The Leukemia and Lymphoma Society please visit my webpage at www.active.com/donate/tntors/tntorsdwood. I tore my calf muscle Saturday! I couldn't believe it after 4 miles of running all of a sudden I heard a loud pop! It is healing fast and I think I will be able to run again soon.
Hope everyone is having a fantastic week! Thanks for stopping by!!! God Bless!!!
Friday, November 3, 2006 5:31 PM CST
Hi Everyone,
McKayla lost her front tooth last night! She is happy to report however that she can still say her s's with out lisping and is blissfully unaware that when she says tooth it sounds like toof now! She is doing pretty well, still has a cough and rash but not as bad as before. We are having her birthday celebration at Chuck E. Cheese which she has wanted for the longest time. Several of her classmates are going to attend.
McKayla received a new bike and I will be posting pictures of her on it as soon as I get it assembled. It was given to her by Cody's Wheels of Hope. What a wonderful organization! Thank You Cindy!
Running is going fine. I am running 14 miles this Saturday so wish me luck!!!
Monday, October 23, 2006 5:20 PM CDT
LTM
Hi Everyone!
Our fundraiser went well and I need to raise just $500 more. Not too bad really. I ran twelve miles this weekend and I still recovering from bronchitis but I feel a little better each day. A special thanks to Fusion Restaurant, Austin Furniture, Nellie Bekker (Avon), Debbie Neal (Home Interiors), Tracy Maccallum (Body Health), Back by Demand, Imagine That, The Garderner's Cottage, Mrs. Tiggywinkle's, Parrott, and the Mission Inn for their gracious in-kind donations!
You can check out my progress and make donations at: www.active.com/donate/tntors/tntorsdwood
If you would like to donate, please email me and I will send you a form.
McKayla is doing pretty well. She is still coughing but I think the infection is gone. She still has the rash but I have seen some improvement with the anti-fungal cream. She loves school and her teacher says she is a joy to have in class. She has a wonderful teacher and we feel very blessed to have her in McKayla's life.
A special thanks to Angel Carole for the nice writing book pencils and stampers. McKayla loves to get mail so she was very excited!!!
Monday, October 16, 2006 12:04 AM CDT
LTM
HI EVERYONE! I WANT TO INVITE YOU TO A FUNDRAISER FOR THE LEUKEMIA AND LYMPHOMA SOCIETY TO BE HELD AT FUSION RESTAURANT OCTOBER 22, 2006 AT 5:00 P.M. THERE WILL BE A DINNER, A 50/50 DRAWING, AN OPPORTUNITY DRAWING, AND A SILENT AUCTION. I AM HALF WAY TO RAISING MY FUNDS SO PLEASE COME AND SUPPORT THIS WORTHY CAUSE!!!! PLEASE EMAIL ME WITH ANY QUESTIONS AND FOR DIRECTIONS.
McKayla is the Honored Teammate for The Leukemia and Lymphoma Society, Orange, Riverside, and San Bernardino counties. We went to the kick-off this Saturday and met a lot of wonderful people and took a lot of pictures! Kasey and McKayla had a blast visiting with everyone. McKayla received a beautiful custom helmet with ballerinas and everyone's signature on it from the cycling team. It came complete with a tiara! McKayla also invited some new friends to her birthday, If you would like to attend, email me so I can send you an invite. She wants Chuckie E Cheese this year because during chemo she couldn't go there due to risk of infection. Of course, I am is still sick and on antibiotics so hopefully I will be better in the next couple of days so I can get my running in!
We went to Disneyland and had a blast with my cousins from Utah! It was so fun and miraculously we rode on on the rides we wanted to in one day!!! Not bad at all! McKayla wants a costume there for Halloween so I guess we will be going back soon to pick it up!!!
God bless everyone!!!
Wednesday, October 11, 2006 5:27 PM CDT
LTM
Hi Everyone! Well McKayla and I have come down with our first fall virus/cold/I dont know what! It started like a stomach flu, McKayla developed a 101.4 temp so I took her to urgent care. She was prescribed zithromax. Her throat is very swollen still and red but she hasn't had a fever in two days! She is also still fighting the fungal infection but it looks like it may be starting to clear up! It was sad today she woke up and had laryngitis!!! But the good news is that she doesn't have to take Bactrim anymore! She isn't feeling great right now but hopefully it will clear soon.
On Friday I got rear ended on the way to work but luckily just a mild whiplash resulted. I also came down with this bug and my throat really hurts today! Kasey has been lucky so far (knock on wood) lol!
OK well I ran 10 miles!!!! It was great until mile 9. That last mile didn't feel so great but I keep training and hopefully it will be ok. Be sure to check out my other website at www.active.com/donate/tntors/tntorsdwood.
Thanks for checking in!!!
Friday, August 18, 2006 11:45 AM CDT
LTM!
Hi Everyone! Just wanted to say McKayla is doing pretty good with her P.T. She still has some problems but hopefully the stretching will help.
She wanted to try a beauty pageant and guess what? She won her age division, cover, back, centerfold, most photogenic, sweetheart queen, universal queen,prettiest face and prettiest hair and overall high point winner! That means she received more points than anyone else at the pageant! She was so happy. She told me, "Wow Mommy, I got prettiest hair." "They must like my new hair." What a great experience for her!
School is starting soon. Kasey will be in sixth and McKayla in first grade. Wow they are growing up so fast.
If you live locally, check out B-2 in the Press Enterprise August 21, 2006 for McKayla and or check i view photos for a scanned version!!!
Thanks for stopping by.
Make sure you sign the guest book so I can read them to McKayla!!!!!
Wednesday, July 19, 2006 11:57 AM CDT
OT!
MAKE SURE TO CHECK OUT OUR NEW FAMILY PIC UNDER VIEW PHOTOS!!!!!
Hi Everyone! Hope everyone is having a great summer! McKayla has her follow up appointment on Monday. She is in PT once a week.
I signed up to run a marathon for the Leukemia and Lymphona society feel free to check out my website at www.active.com/donate/tntors/tntorsdwood.
God Bless everyone!
Tuesday, June 27, 2006 12:08 AM CDT
OT!
Hi Everyone,
Angel Carole thanks so much for the adorable straw purse and accessories! McKayla took her bubble bath today with the bath confetti and really liked it!
We had a busy weekend with the dance recital. The girls performed wonderfully! They had a great time and love their friends from the dance studio!
Kasey is almost out of school! She is sad and happy at the same time. She had a great teacher this year!
God Bless!
Thursday, June 15, 2006 6:17 PM CDT
OT!
Hi Everyone! We are very excited about the upcoming dance recital! The girls feel so good about dancing! Kasey is doing all these special projects for school as well which are keeping her real busy! I have added new pics so please look at them under photos!
Pray for Jacob's family as he went to heaven this week. His story was very inspirational. (http://www.caringbridge.org/fl/jacob)
God Bless!
Tuesday, June 13, 2006 12:54 AM CDT
OT!
Hi Everyone! We have been very busy preparing for school's end and the dance recital! The girls are both very excited about it. Kasey is in the opener and a 50's jazz number. There are three girls in her dance. McKayla has a ballet solo, a jazz number with four girls in it and she also is in the opener. McKayla has been doing pretty well. She had her counts examined twice as she had high sodium. She is feeling pretty well and just finished her school year.
Hope everyone is well and God Bless all of you!
Tuesday, March 28, 2006 6:00 a.m.
OFF TREATMENT!
A special thanks to Brenna for the girl scout cookies and Angel Carole for the beautiful bracelet!
McKayla went OT yesterday! We went to the clinic expecting one more month but were pleasantly surprised by her Hem/Onc saying this was it! She received Pentamadine through IV which she had an allergic reaction to and had to be stopped. She also received her Vincristine for hopefully the last time! She is very excited and wants to have a party! She and her sister have been sick with respiratory infections so I am hoping the antibiotics will clear it up quickly!
McKayla's OT request: Chuck E. Cheese and a party of course, lol!
What's in the future, medically: McKayla has side effects that she will continue to be evaluated for. She is currently needing a neuro psych and orth surgeon consult. She will see the Hem/Onc every other month!
What's in the future, socially: McKayla would love to have as many playdates as possible, so call us so we can get together! She will be performing in a dance recital in June! She is in three numbers, one of them is a ballet solo!
What's in the future, academically: McKayla is currently studying the life cycle by raising Painted Lady Butterflies. They are in the Chrysalid stage. She plans to name them!
I want to thank everyone that has been supportive to us over the past 27 months! God Bless you!
Wednesday, February 15, 2006 6:27 PM CST
LTM
McKayla was diagnosed two years ago on January 29th. Our family has endured a lot of the past two years, especially McKayla of course. Divorce, selling our home and moving, me having to go back to work, financial difficulties, and new school to name a few. So even though it has been two years time has gone by swiftly. If things go well McKayla will have her last lumbar puncture February 27th! We are approaching her OT date in April which is great. We still will go to the clinic once a month for lab work and IV infusion for anothe year. After that we go every other month. Her immune system should recover after one year.
Thank you Angel Carole for the nice books you sent to McKayla she really likes them!
God Bless everyone!
Monday, December 12, 2005 11:08 AM CST
Hi Everyone!
I know its been awhile so I wanted to give an update. First, I want to say thanks to Angel Carole for the nice gift she sent to McKayla. It really means so much to her to receive mail! Thanks for being a great Angel!
November was a very hectic month! We were able to make McKayla's M-A-W trip which was a true blessing! She picked the Disney Cruise and we had a blast! I will post pictures as soon as I get someone to resize them for me because my home computer with the software is broken. I guess bad processor or something. McKayla's favorite part of the trip was the stingray hut! We got into the water with the stingrays, feed them, and petted them. They gave us snorkel gear also! Kasey enjoyed snorkeling. The sting rays are funny, when they like you they rub up against your legs like a cat! Who would have known! It was great that the doctor and court allowed us to go on this trip because McKayla has been having a lot of pain and the doctor ordered an MRI to check for osteonecrosis and relapse.
She had the test on November 28th and the good news was that she didn't have osteonecrosis or relapse. The bad news was that she has bone changes from the steroids, she is at risk for an osteochrondral lesion, and she has iliopsoas bursitis. Her right hip is worse than the left and she may have to have surgery or another type of procedure to drain it. I am awaiting the appointment to the orthopedic surgeon. The oncologist did a consult with the orthopedist and he said he definately needed to see her. At least we know where some of this pain is coming from.
McKayla had her dr. appt on the 5th of the this month. It included a LP, Pentamidine, and Vincristine. We had to wait for a long time for her procedure. She started feeling sick from not eating due to the NPO order, so I asked for her to lay down. She was feeling nauseous. She went through the procedure fine and then she got really sick. She ate the crackers and juice and about 20 minutes later she was vomiting, and breaking out into little sweats. She kept vomiting so I asked for Zofran. She hadn't even gotten the Vincristine yet poor baby!
McKayla is doing a Nutcracker recital this week! Her teachers have been very understanding about her pain and have modified stretches for her to enable her to participate. She loves to dance and be on stage!
I hope everyone is doing well and having a wonderful December! Merry Christmas and Happy New Year!
Tuesday, October 18, 2005 11:56 AM PST
LTM
Thank you Angel Carole for sending the books, bear, and princess things to McKayla! She loved them! Kasey also was so excited that you send her the Ello and flower! She felt very special that you knew about her birthday!
Thank You Ms. Pam for your cards and gifts. The kids love that you still think of them and we hope we can see you again soon! If things go well maybe we will be able to go to faith formation again next September!
Hi Everyone! We are still above water even with all of the rain we have been getting lately! McKayla is on antibiotics for a UTI and will be scheduled for a MRI to rule out AVN due to steroids. I am really nervous about this, so please send positive thoughts and prayers our way.
We had a great time this weekend at the pumpkin patch party which was thrown by the Candlelighters! The girls rode the ponies, went to a petting zoo, and played on the different inflatable rides they had. We decorated our porch for halloween. McKayla is going to be Mulan, Kasey is going to be a pirate, and I am going to be a nurse! Cinnamon doesn't have a costume, any suggestions?
The girls are enjoying dance and next week they get to bring a friend!
Kasey is going off track this week! Yay! She is very excited because she will be working on her science fair project while off track!
God Bless everyone!
Friday, September 23, 2005 3:19 PM CDT
LTM
Hi everyone! Just wanted to thank McKayla's angel Carole for the adorable smiley face cookies! McKayla was so excited to get them!
Kasey is doing a little better, she is still taking antibiotics. She has been avoiding dairy and potatoes and her stomach does seem to be a little better.
McKayla is doing pretty well except for hunching over when she walks lately.
God Bless!
Tuesday, September 20, 2005 12:17 AM CDT
LTM
Hi Everyone! We participated in the Candlelighters Walk on Sunday. It was a nice event and we had a great time!
Kasey's birthday is coming up. She is going to be 10! She hasn't been feeling well, the doctor thinks she may be lactose intolerant and have a UTI (ugh!) so she is on antibiotics. She is not happy about giving up her dairy products!
McKayla is doing pretty well just having a lot of fatigue and her legs are tired a lot. Her hair is growing fast. She is 48" tall! Well, that is all for the update at present. I will post more pics as I get them!
God Bless everyone!
Tuesday, September 13, 2005 12:32 AM CDT
LTM
Hi Everyone,
I had the most horrendous day at the clinic yesterday. McKayla was scheduled for LP and they have a new PA. She had orders for sedation so that means no food. We also would have had a new child life specialist because our regular one got transferred to inpatient but we were able to steal her away which was a good thing! The electricity went out, so we were on stand by until 2:00 p.m. When we got in there everything seemed fine but I noticed that when he made the "poke" McKayla felt it more than usual. He had a difficult time at first getting fluid and had to move the needle around! I also noticed his hands were shaking which made me uncomfortable. He finally finished and the procedure was done. I had a hard time getting them to start her Pentamadine, the orders were lost. McKayla also is very active after sedation and pulled on her iv and blood started coming out. We got the nurse to fix it. Her IV was still good she had just pulled a connection loose. The doctor brought his entourage into examine McKayla but no one checked her LP site. I lifted her shirt to notice that the PA had gone way above the lumbar area. So I am now awaiting to here back from the medical director. McKayla seems fine but I am exhausted!
God Bless everyone!
Kasey's birthday is September 29th!
Monday, August 22, 2005 10:46 AM CDT
SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH! THE GOLD RIBBON IS THE SYMBOL FOR CHILDHOOD CANCER!
LTM
Hi everyone,
I posted a snapshot of the photoshoot picture if you want to take a peek! McKayla is very excited about it and wanted to know when she can do it again!
McKayla is doing well except for her leg pain. She hurts and fatigues in both legs. We swam a lot this weekend! McKayla is learning fast. She and Kasey love the water and never want to get out!
McKayla lost both of her bottom teeth this weekend! It seems like they are both growing up so fast! McKayla tells me she is rich now and can't wait for the rest of her teeth to fall out, lol! She thinks the tooth fairy is great! She also told me after the first tooth fell out that she is a big girl now and should only be addressed as McKayla, not any cute nicknames, which she used to love.
My birthday is next week and Kasey's is September 29th! Wow this year is flying! I am slowing getting settled into the new house. A lot of unpacking to do yet. Well better run! God Bless everyone!
Friday, August 19, 2005 3:54 PM CDT
*NEW PICTURE!*
LTM
Hi Everyone! McKayla had her doctor appointment on August 8th and the hem/onc has discontinued her steroids. She fared much better and was not in as much pain.
We are officially moved! Now just to unpack! I felt like I would be moving forever!
Thank you to the Griffiths for the Polly Pockets! McKayla loves them! We just got them today but the postmark says May 10th! McKayla was so excited that someone sent her something!
McKayla will be in the local Candlelighters calendar! Her month is February! I will post some snapshots soon! When the calendars go on sale I will let you know in case you would like one! All proceeds go to Candlelighters which helps children with cancer.
I can't believe another birthday for me is right around the corner! This year has been hard and full of challenges and obstacles! Hopefully this next one will be less eventful!
God Bless!
Thursday, July 14, 2005 11:34 PM PST
Hi everyone!
McKayla is right her and she wanted me to tell everyone hi for her! She also wants you to sign her guestbook and say hi back, lol!
McKayla had her Dr. appt. and chemo on Monday. All counts were in normal range, YAY! She had to have a VCUG and a kidney ultrasound. I haven't heard the results yet. We are scheduled to move on July 29th and the girls have their recital the weekend before. Busy! Busy!
God Bless!
Wednesday, June 29, 2005 4:18 PM CDT
Hi Everyone!
Kasey and McKayla are getting ready for their dance recital in July. They both are very excited! Summer let out on June 9th and they have been having fun with the neighbor kids in the sprinklers. Our house has sold so we will be moving at the end of July. I am purchasing a home for the girls and I to move into. McKayla's hair continues to grow and she is feeling pretty good this week! Her next appointment is July 11th. Hope everyone is doing well! God Bless!
Friday, June 17, 2005 1:35 P.M.
LTM
Hi Everyone! McKayla had her lp and Vincristine on Monday. Counts are good. McKayla is feeling real rotten right now due to the chemo. Her neck, stomach and legs keep bothering her. She is scheduled to have some kidney and bladder tests next month. We were looking at her protocol with the doctor and estimate only three more lumbar punctures and about 10 months left of treatment!
Kasey is doing great! She just finished reading Twelfth Night by William Shakespeare and gave an oral presentation to her E.S. Pretty good for a fourth grader!
God Bless Everyone and Happy Father's Day!
Wednesday, May 18, 2005 1:32 PM CDT
LTM
Hi Everyone! We had a pretty good weekend at the Riverside Relay for Life. McKayla felt like a little celebrity and enjoyed every minute of it! She was very happy to see the other people there that were cancer survivors. She was the youngest survivor there as far as we could tell. The children rode the firetruck to the stage and came out of it and stood on stage when their name was called. McKayla love the fire truck, she was concerned about riding in it standing up. She told me next year she needs to be second in line so she can sit down! The survivor shirt is purple, which made McKayla very happy because that is her favorite color. McKayla rode in her stroller for the survivor's lap and then we played games and made friends with a soriety of action heros! The girls loved playing with Batgirl and Supergirl!
McKayla had her doctor appointment on Monday. Her counts are still high, but that could be because of the cough she has had. The doctor ordered and chest xray and they say it isn't pneumonia. He is also wanting to do some more testing to check her bladder.
She is on steroids this week. She is grouchy and food obsessed! Luckily, she only has the steroids for five days a month!
I am hoping to post new pictures, so check back soon!
God Bless Everyone!
Thursday, May 12, 2005 9:22 a.m.
LTM
Hi Everyone!
McKayla had her second filling on Tuesday. The cavity wasn't quite as big as the first one. She felt the needle this time poor girl! She is coughing more, so hopefully the doctor is right that it is just her asthma. You can't help but worry when your child is on chemo. She hasn't had a fever though.
God Bless everyone. Prayers and postive thoughts are always welcome!
Monday, May 9, 2005 6:11 PM CDT
Hi everyone!
McKayla went to the doctor today, she is having a lot of dificulty with her asthma. She is congested and coughs a lot. She is using a nebulizer. She feels pretty good otherwise.
We had a nice relaxing Mother's Day at home. The girls made breakfast for me! What an adventure! Kasey actually swept and mopped!
God Bless Everyone!
Thursday, May 5, 2005 5:45 PM CDT
LTM
Hi Everyone! McKayla had her first filling on Tuesday. It went well no complications. You can't even tell that its a filling! She has one more next week. Her appointment for chemo is scheduled on May 16th. She has had a cough for the past few days but besides that she is doing pretty well.
God Bless and Happy Cinco de Mayo!
Monday, April 25, 2005 1:50 p.m. PST
LTM
Hi Everyone! Just a quick note to let you know that McKayla spiked a fever of 101.9 on Friday, so off to the clinic we went. She has a UTI and is on antibiotics. They gave her IV antibiotics and fluids while we were there and she is taking Cipro orally. We were so grateful to the wonderful staff at CHLA and their prompt attention! They work real hard there! We were so relieved not to go to the emergency and not to have to stay! McKayla is feeling a little better today, although she does have a cough.
God Bless!
Thursday, April 21, 2005 3:30 p.m.
LTM
Hi Everyone! McKayla had her doctor appointment on April 18th. Her ANC is too high (almost 6,000) especially neutrophils, so her doctor has increased her 6mp to 1.5 tabs every other night to see if this will lower the counts. If this doesn't work he said they would increase the Methotrexate. She did have a little temperture but the doctor said that since it is not over 100.3 f that it is not a true fever. She has been feeling real lousy this week from the Vincristine and Decadron. I am so glad that the Decadron pulse is only for five days! She is still taking dance and loves to sing. We were watching American Idol the other night and she exclaimed, "I want to be on a show like that!"
Other News: Our house sold and then fell out of escrow, so it is back on the market.
Kasey: Kasey has a loose tooth that she is very anxious to fall out because "I could really use the money from the tooth fairy." She is too funny.
Thank you to everyone for all of their help and for checking in on us. McKayla loves getting mail, she asks me if she got anything everytime I go to the post office. God Bless!
Wednesday, March 23, 2005 4: 55 PM PST
LTM
* New link to Hawaiian Tropic website. McKayla appears on there in the Hollywood Babe photoshoot without hair! It was right after Delayed Intensification.
Happy Easter!
Hi everyone! McKayla had her LP, Vincristine, and infusion on Friday. The doctor said her ANC is too high but I think she was coming down with a cold. He said that if her counts stay high next month he will increase her chemo. She is already at 100 Hopefully it is nothing.
We had fun on Saturday, cleaning house and playing outside. Our old neighbor, Jeanie came over and spent the day with us. The kids had a blast playing on the trampoline, baking cupcakes, and eating pizza. Our neighbor Curtis came over and ate pizza and played too. It was a great day!
McKayla is going to be evaluated for speech therapy through the school. She is having some problems enunciating words.
Hope everyone has a blessed Easter!
Wednesday, March 16, 2005 4.07PM PST
LTM
Hi Everyone! McKayla is doing pretty well. She has been able to ride her bike, dance, and jump on the trampoline! It is so wonderful! A far cry from not being able to walk during rougher times. She still does some toe walking, but she is doing better than before. She has her doctor appt this Friday.
Kasey is trying to ride her bike without training wheels but doesn't quite have it yet. She has also been jumping on the trampoline. I have been working and my allergies and asthma are giving me a hard time since Spring is almost here!
We are looking forward to getting our house sold. It will be nice to have a fresh start.
Thank you to all of you who have been supportive through this past year. Thank you for all of your prayers. God Bless!
Thursday, March 3, 2005 2:18 PM CST
LTM
McKayla is feeling pretty good this week. She still has the rash, I think she will have it until she is off chemo. She and Kasey are both taking ballet through school. She is excited for us to get our house sold and move into a new home. This past year has been rough and the change will be good for us. I have started working now. My parents have been gracious enough to take care of the children for me while I am at work. Thanks Mom and Dad!
We have been so blessed to be around caring people. Thank you to all of you who have been so supportive and thoughtful over the past year!
Tuesday, March 1, 2005 3:17 PM PST
LTM
McKayla finished her Decadron this weekend which I am very thankful for because it was really making her feel bad. She has been very moody poor girl! Kasey is adjusting to her new diet and exercising more. Today she is taking her writing exam at school.
For those of you who do not know, Daniel and I are getting a divorce. Things have been real rough this past year.
Please pray for our family.
Tuesday, February 22, 2005 11:00 a.m.
LTM
McKayla had her doctor appt and chemo yesterday. Her counts are good. Today she isn't feeling very well. She is on a Decadron pulse of five days and continuing with the Methotrexate and 6mp.
I received Kasey's labs back and she has high cholesterol, high tricycerides and low t3. She is on a special diet which is low in sugar, carbs and fat. The endocrinologist said that this is most likely hereditary. We have added more protein into her diet which definately seems to be agreeing with her.
The weather here has been so crazy. The rain is just non stop. Not at all the weather we are used too. We anxiously await a break so the girls can go outside to play. On Saturay, McKayla said, "Look Mommy, there is a river on our street!" It did look like it!
Thank you Sonja for the Valentine's goodies! McKayla loved them!
Thank you for visiting McKayla's website. God Bless!
Wednesday, February 16, 2005 12:01 AM CST
LTM
We had an uneventful Valentine's Day, which is a good thing. I feel very grateful to have both of my daughters here with me. It has been a little over a year since McKayla's diagnosis.
Today McKayla woke up vomiting and has returned to sleep. This does happen so I am hoping it is just from the chemo and not the flu. She has been getting stronger lately and playing outside when it is sunny! I make sure to apply sunscreen as her skin is very sensitive from the medications.
McKayla has her next appointment on February 21st at CHLA.
Kasey has symptoms of insulin resistance so the doctor referred her to a dietician who has her on a diabetic diet. She also has high cholestrol. She is adjusting well to her new diet, although it is hard at times for her. She is also exercising more which is great! Both she and McKayla have ballet class now and love it.
Please pray and send positive thoughts to Victor. His cb site is www.caringbridge.org/pa/victort. He recently was diagnosed with a relapse in his CNS fluid.
Thanks to everyone for all your help! Thank you for all of your prayers.
Friday, January 28, 2005 10:14 AM CST
LTM
Hi Everyone! McKayla had her doctor visit on Monday and everything seems good. The only thing is her ANC is a little on the low side, so the doctor is going to monitor her to see if she needs a med adjustment. We are trying to get her scheduled with the Gastroenterologist because of her stomach problems. McKayla still gets the rash on her face occasionally. She isn't feeling that great this week due to the Decadron Pulse she is on. She has been feeling a little stronger before this week however.
Thank you to group of friends for the flowers and toys for Kasey and McKayla! It really brightens their day!
Wednesday, January 12, 2005 12:00 PM PST
LTM
Happy New Year!
We have been very busy with doctor visits and school. McKayla is feeling a little better and she even has bursts of energy, where she acts really silly! She is getting so tall too! She loves learning but fatigues very easily. She is so sweet she writes I love mommy on everything! McKayla can't wait for her hair to grow longer! We put a headband on the other day and she was so tickled! She is very girly! She likes to wear dresses and put make up on and have her hair and nails done! She loves to perform! We have been in the house a lot because of all the rain! This isn't California weather! At least today it is looking better. No rain and the sun is peeking out!
We would like to thank everyone for their prayers and support! We couldn't do it without all of you!
We are still having a lot of financial difficulties with the house and bills. The mortgage is way behind and even though we have it on the MLS no one has called. The realtor says the market is real soft right now. If I could catch up the payments it may be better to keep it as I have checked around and rent is high.
Wish List:
1. grocery gift cards to Vons or Staters
2. gas cards
3. good nights 40+ pounds
4. huggies wipes (McKayla is allergic to some)
5. Gymboree bubbles (McKayla loves bubbles but
is allergic to some kinds, this one is ok)
6. gift cards to Target, Walmart, or Mervyns
Thank you again for all your prayers help and support! God bless and keep each and everyone of you!
Monday, December 13, 2004 8:12 AM CST
Happy Holidays! New Photos, take a look!!!!
LTM
McKayla is starting to feel a little better just extremely tired right now. She fatigues real easy. Her ANC is better than last week thanks to the Decadron. She has been having to have visits weekly to monitor her since she has been having the additional problems. They are referring her to a GI specialist. She is also going to be scheduled for a kidney ultrasound.
The girls are both very excited for the holidays! We are going to start our baking this week and hopefully will get a tree this week also!
I want to thank everyone for all your help! Thank you Friends of Allie,Holden's Hope Train, and Group of Friends! This has been a very difficult year for us. I am very anxious to start 2005! McKayla will be one year in treatment in January.
1. Samantha-from American Girl
2. Samantha-accesories
3. Samantha nightie set- Size S
4. Bitty Baby crib, high chair and changing table
5. Bitty Bunch and accesories (except Lambie)
6. Disney Princesses robe size s 6-6x
7. Wiggle Walkers
8. Fur real friends Luv Cubs-Panda
9. games for playstation 2
10.
11.
12. Disney Light and Sound Vanity
13. Baby Annabelle
14.
15. CD walkman and head phones
16. Cabbage patch Kids
17. wiggle walker
18.
19.
20. Game boy advance sp
Kasey's Wish List
1. Fur Real Luv cubs-Panda
2. games- Don't wake Daddy, Bulls-eye ball and Lucky ducks
3. Baby Annabelle
4.
5. baby born Love me Chou Chou
6. Baby Annabelle accessories
7. art kit
8. head phones
9. cd walkman
10. McDonald's McFlurry Maker
11. The real cotton candy machine
12. Hershey Smores Maker
13.
14.
15. Friend Chips
16. ESPN Game Station
17. Lizzie McGuire books-numbers 1-6 and 8-10 and 12
18. GoGo my walking pup
20. My photo booth
21. Fast lane rc turbo Incredibles
22. Ultimate big air tower
23. Magnetx
24. eduscience deluxe microscope/telescope set
25. Pokemon v trainer
26. Password journal
27. American Idol Twin Dancers mat
28. racing wheel for playstation
29. game boy advance sp and games
30. Video now color
31. Teentech DVD portable player
God Bless Everyone and Happy Holidays!
Friday, November 19, 2004 8:36 AM CST
LTM- McKayla turns five on Monday!!!!!!!!
Hi everyone,
The last post worked so I am going to try again! McKayla has been through a lot with her infections including an emergency room visit and was almost hospitalized twice. She is now starting to feel better and was able to go to dance this week. She had such a good time. We also went to the beach last weekend just to get out and both girls had a blast. Weather was in the mid to hig 70's. It was like summer. I am hoping this is a start to McKayla doing well!
Please pray for us we are having difficult times. The mortgage is behind. Please pray for Danny that he gets the help that he needs and pray for us that everything will be ok.
McKayla's Wish List
1. Samantha-from American Girl
2. Samantha-accesories
3. Samantha nightie set- Size S
4. Bitty Baby crib, high chair and changing table
5. Bitty Bunch and accesories
6. Disney Princesses robe size s 6-6x
7. Wiggle Walkers
8. Fur real friends Luv Cubs-Panda
9. games for playstation 2
10.
11.
12. Disney Light and Sound Vanity
13. Baby Annabelle
14.
15. CD walkman and head phones
16. Cabbage patch Kids
17. wiggle walker
18. My Baby Princess Jasmine-Disney
19.
20. Game boy advance sp
Kasey's Wish List
1. Fur Real Luv cubs-Panda
2. games- Don't wake Daddy, Bulls-eye ball and Lucky ducks
3. Baby Annabelle
4.
5. baby born Love me Chou Chou
6. Baby Annabelle accessories
7. art kit
8. head phones
9. cd walkman
10. McDonald's McFlurry Maker
11. The real cotton candy machine
12. Hershey Smores Maker
13. Cabbage Patch kids
14.
15. Friend Chips
16. ESPN Game Station
17. Lizzie McGuire books-numbers 1-6 and 8-10 and 12
18. GoGo my walking pup
19. My Baby Princess Belle-Disney
20. My photo booth
21. Fast lane rc turbo Incredibles
22. Ultimate big air tower
23. Magnetx
24. eduscience deluxe microscope/telescope set
25. Pokemon v trainer
26. Password journal
27. American Idol Twin Dancers mat
28. racing wheel for playstation
29. game boy advance sp and games
30. Video now color
31. Teentech DVD portable player
Thank you to everyone for everything we couldn't do it without you! God Bless everyone!
Tuesday, November 16, 2004 4:00 PM CST
LTM
I have been having a hard time posting new journals due to some kind of server problem. If this works I will post again soon.
Thanks to everyone for their help and prayers. God Bless.
Tuesday, November 9, 2004 12:47 AM CST
hi
Saturday, October 30, 2004 2:30 PM PST
LTM
McKayla now has a head and chest cold and cough on top of everything else! She is taking two kinds of antibiotics and luckily she hasn't had a fever. She is still in a lot of pain and on Tylenol with Codeine.
Thanks so much to Danny's parents, Heather and her mom, for the food. Out immediate need for food is definately met. Thanks to St. Vincent De Paul for your help. We still do not have the money for the mortgage. I am going to contact them on Monday and see if they will help us at all. Thanks to everyone for everything. We couldn't do it without you. Thanks for all your prayers and well wishes.
McKayla loves all the birthday cards she has been getting. Her birthday is November 22nd and she is very excited. She will be five! I will try to post a list soon.
Wish List:
1. We are in need of white towels, white wash cloths, and white twin sheet sets, Good Nights, and Huggies wipes
2. Gift cards to Walmart or Target
3. Grocery gift cards
4. Gas gift cards
Friday, October 29, 2004 12:57 AM CDT
LTM
McKayla continues to have problems with the breakdown. The doctor says it might be some kind of fungal infection and we do have a prescription ointment for it. The antibiotics seem to be working for her other infection. She is now taking Tylenol with Codeine to help with the pain. It really does work. She was screaming so much and now can show some of her cute personality again. She actually slept last night. She is very tired today. We go back to the clinic on Monday unless she gets worse then we will go today.
Thank you to all of the people who are reaching out to us. We received some food last night from our good friend Kristin and her family. We also received some candy from Cynthia and a group called Friends of Allie say some help is on the way. Any help is greatly appreciated. Thank you to all of those who are praying for McKayla and our family.
Some of you have asked we post a wish list. So far this is what I have: 1. Gas Cards
2. grocery gift cards
Staters or Vons
3. Target or Walmart gift cards
I am still trying to get the girls to tell me what they would like for Christmas and McKayla's birthday.
Thank you again. God Bless.
Wednesday, October 27, 2004 10:26 PM CDT
LTM Day 23
Well we spent all day on Monday and Tuesday at the hospital. McKayla is really not feeling well. She screams most of the day because of discomfort and pain. She has an infection which she is taking antibiotics for. She also has an intestinal blockage. She has lost bowel and bladder control. She also has breakdown pretty bad.
We are having some very bad financial problems due to the loss of income and expenses. We are in need of help. We have the house listed but the mortgage is behind. I cannot pay for the utilites, food, or gas. I have no money. If anyone knows of anywhere to turn, please email me. I have empty my mailbox so I am able to get messages.
Monday, October 25, 2004 10:36 PM CDT
LTM Day 21
Ok well, long term maintenance is not what we had expected. We have been at the clinic every week due to low anc. McKayla now has a UTI infection and may have an intestinal infection. She is in a lot of pain and discomfort. We didn't get home until after 8:00 pm tonight. I am praying that she will not get a fever tonight because then I would have to take her to emergency and she would most likely be hospitalized. Her ANC was higher this time but they are guessing it only because of the infection.
We are having serious financial difficulties at this point. I feel like we are drowning. This has been such a difficult year. We have listed our home to sell.
Please keep our family in our prayers during this rough time. God Bless you.
Thursday, October 21, 2004 10:11 AM CDT
LTM
Hi everyone. It has been a hard couple of weeks. McKayla's ANC is still on its way down. It is at 890. It is not low enough to stop or lower the dose of her medication, but she really is not feeling well. She woke up vomiting yesterday. She has her rash back and she cries very easily. She has also been having pain in her arms and legs, head, and back. I am hoping she will start feeling better soon.
Both of our cars broke down to the point we had to get another one. We drive down to Los Angeles for treatment which 120 miles round trip. We are experiencing a lot of financial problems with only the one income. McKayla is in need of dental care which we can't afford. Times are very tough right now. We are going to have to sell the house.
McKayla's birthday is November 22nd. She will be five. I will be posting her wish list soon. I will also post Kasey and McKayla's Christmas list.
Thanks to everyone who has sent things to the girls. It really helps raise their spirits. Thanks to Sonja for the bear and crocheted angel. Thanks to Cynthia for the halloween PJ's. Too cute!
Thursday, October 7, 2004 4:03 PM CDT
LTM Day 4
McKayla started LTM on Monday. Her ANC was a little low, 950, but the doctor started her because she was so close. They like to start if it is 1000 or above. She is feeling yucky this week and the steroids definately don't help. She was only able to go to one hour of school on Tuesday because she felt bad. Only a couple more days of Decadron this month. McKayla will be in a dance recital this Christmas as long as everything is ok.
Kasey also is not feeling well. She is on antibiotics.
Danny's birthday was yesterday! We went to The Roadhouse for dinner it was fun. The girls got up and danced with the food servers. I wish I would have had my camera with me! Danny was feeling sad because he doesn't get carded anymore!
McKayla's birthday is next month. It is November 22nd. She is excited to turn 5.
God Bless everyone and thank you for keeping us in your prayers! We appreciate all of you!
Friday, October 1, 2004 8:25 PM PST
We have had a busy couple of weeks! McKayla and Kasey have started school and are going to the academy once a week. I go with McKayla to make sure her needs are met and I can tell you that this works out very well. We started out trying for all day Kindergarten but McKayla was exhausted after the first two subjects the first week. She did a lot better this last Tuesday. I just take her home at lunch, and take her back for the last hour. This works out a lot better for her. The people at the academy have been so nice about letting me know if their child is sick and keeping them home if they are!
Kasey's birthday was last Wednesday,September 29th, we took her to Sea World. She is nine years old!!!! The girls really loved it!!! Kasey liked the polar bears and McKayla liked the Beluga Whales. She remembered that song, "Baby Beluga" by Raffi. I need to get a copy of that song for her. If anyone has access to it and can make me a copy let me know! Kasey loved the shows because they get you all wet!
Today we went to Oak Glen. We picked apples and ate apple pie. We are going to do some baking tomorrow. We all love the slower pace and the quilts and country items.
McKayla has her next clinic appointment on Monday. She is scheduled for LP and Vincristine by IV push. If all goes well, she will start Long Term Maintenance!!! Please keep her in your prayers!
Family Birthdays: My birthday was August 30th, Kasey's was September 29th, Danny's is October 6th, and McKayla's is November 22nd. As you can tell we have a birthday every month until December and then it is Christmas!!!
Saturday, September 11, 2004 8:39 AM CDT
Interim Maintenance II Day 33
McKayla had a LP, doctor appointment and labs. Her labs were ANC 8060, HGB and platelets were normal. We are not sure why her ANC is high, so please pray for her. She is currently on her Decadron pulse and having roid rage. She is also having neck pain.
We had to give our new dog back as it turns out she is a bit unpredictable and we cannot have that around the kids. We have contacted Boxer Rescue to let them know she is there. We have decided to wait on a dog until McKayla completes treatment just to be sure.
To help out with expenses we are selling some things on ebay. So if you get a chance check out items under seller name Irishinlove.
Thanks to a group of friends for the wonderful flowers and black teddy bear! The girls love them!
Sunday, September 5, 2004 4:10 PM PST
Interim Maintenance Day 27
McKayla is doing well!! Her counts were ANC 2910, platelets 294,000, and HGB 12.9. We had her counts done so she could go to the dentist this week. It turns out poor McKayla has five cavities that the dentist says are caused by chemo!
We went to Disneyland for my birthday and the girls had a blast! It was also the last time our annual passes were good! Kasey's birthday is on September 29th.
McKayla started a dance class last Thursday! She absolutely loved it since she hasn't been take any since dx. We put her back in dance besides for the obvious reason--she loves it, but also to help decrease the toe walking and foot drop since the PT is focusing on general strength and has not helped with this. I will be adding photos soon!
Mckayla still has the rash on her face that won't go away and I am going to request a consult with a dermatologist on Wednesday when we go to the clinic. McKayla will be receiving Methotrexate in the spine (LP) and Vincristine in the vein. She will also be on a five day course of Decadron (here comes the roid rage).
She starts Kindergarten at home on September 7th and at the academy September 21st. She is so excited!!!
We also have a new addition to our family. Her name is Sugar. She is 1 year and 4 months old. She is a brindle boxer. Many of you know that we lost Kasey's dog Ginger (Kasey laid claim on her and was very attached) to some form of cancer only two weeks before McKayla was diagnosed. We decided not to get another dog right away because of McKayla's condition and because we have another dog Cinnamon. Our Hem/onc says that dogs are fine to be around McKayla. We hadn't planned on looking for another dog, but when we went to the animal services to pay for Cinnamon's license we decided to look at the dogs. We were amazed at how many dogs were there and many purebred. We saw Sugar and the girls really liked her. She has the tiniest stub of a tail that she can wiggle into a blur! She was also confiscated from a breeder that wasn't feeding her, and she had been nursing puppies. She had her collar and license on so we assumed that the owners were coming for her. But they relinquished ownership instead of going to hearing and according the animal control supervisor, "No one had even taken an interest in the poor dog." So we decided to visit with her. She is so calm and loving. Of course by this time, the girls had named her! So we sprung Sugar from doggie jail and she was spayed and brought home on Friday. I took her to our vet Saturday and he said that besides being thin she seems to be in very good health. we ran some tests just to make sure. We haven't introduced her to Cinnamon yet as the animal services recommends two week quarantine and this way Sugar can gain some weight before meeting her. She needs to gain around 12 pounds.
Danny continues to have back pain and is going to PT three times a week. Please pray for him as he has to keep up with a grueling schedule of working two jobs.
Thank you to the wonderful people around us who pray for us and send special gifts: Aunt Kathy for the adorable puppet set. I have never seen anything like it and it is too cute. The puppet and clothes are actually crocheted! McKayla loves to play puppet show and the little outfits are so cute! Thank You Aunt Lori for the worry stone key ring, I use it a lot! Thank you to Diana and Tere for the wonderful package sent to McKayla that arrived on Saturday. Thank you so much for the games, puzzle, backpack,bear, crown pin, Twins doll set, stickers, twin doll set, Barbie rolling art desk, sip mug, and other goodies. She really loves the Barbie rolling art desk and now she has covered the refridgerator with her artwork!!!! She has been walking around the house today with the backpack playing school!!!! She says it is the cutest backpack ever! Thank you to everyone for keeping us in your thoughts and prayers! Knowing that people care is what keeps us going! Please continue to sign our guestbook, as McKayla loves to read them!!!
Wednesday, August 25, 2004 12:39 AM PST
Interim Maintenance Day 16
*New Pictures*
We have been having a very busy last couple of weeks. On Thursday I went to an amazing home school conference. It was very well put together and my mother was nice enough to come over and watch Kasey and McKayla so I could go! On Sunday, we went to Knott's Soak City for a photo shoot for Hawaiian Tropic because of McKayla's Hollywood Babe photogenic win. McKayla was so excited and she had a blast! We came home and went to see Spiderman II. The kids loved it, especially Danny!
Today we went to the park, rode bikes, went for a walk, painted Kasey's room, and played with the neighbor kids and McKayla took a nasty fall in the bathroom. The doctor said to continue to monitor her. No wonder I am tired!!!
Thank you to a special group of friends for the flowers, candy, toys and balloon! There was something for everyone!!! It was the highlight of our Saturday!!
Danny has a herniated disk. Please keep him in your prayers as well as the rest of us.
God Bless!
Tuesday, August 17, 2004 10:00 p.m.
Interim Maintenance II Day 8
Hi everyone. Well, Kasey, McKayla and I are trying to redecorate Kasey's room. We've got the decorating bug! Kasey will be nine next month! I can't believe it. She is starting 4th grade. My birthday is this month but we won't talk about how old I am! LOL! Kasey loves Lizzie McGuire so even though I have one idea for her room, she has another! After we finish with Kasey's, we will continue on McKayla's room.
McKayla is still feeling kinda icky. She says she hurts all over and I think it might be part of the Decadron withdrawl. She still feels better than she was last month though. Tonight she has to take the Methotrexate, so hopefully it will not make her feel worse.
We are trying to get ready for school this year. I can't believe that McKayla will be going to Kindergarten! She is such a big girl and ready to learn. I am going to an educational conference this week to learn about some different curriculum and teaching styles.
A special thanks to Danny's parents for the nice Easter baskets, and goodies for Kasey and McKayla. They were very excited! McKayla really liked the musical card too! It was a nice surprise. Thank you to Aunt Marlene and Uncle Ed for the KFC the other night!
Saturday, August 14, 2004 5:25 PM PST
Interim Maintenance II Day 6
McKayla finished her last dose of Decadron today. YaY! She is having cravings and roid rages. She also has deep rings around her eyes. These are side effects from the Decadron. Hopefully she will be feeling better next week. We went to the movies twice this week. We saw A Cinderella Story and Princess Diaries II.
We would like to say thank you to Aunt Betty for the lovely cards; Savannh Turpin for the wonderful princess books, color wonder stuff, crayons and coloring book, and dress up stuff; and Hallie and Bailey Lawson for the cute Wish Care Bear and video.
We are so thankful to all the wonderful people and are deeply touched by those of you who send well wishes and prayers our way!
We also want to wish all of our friends from the HT pageants good luck at the West Coast Finals!!!!!!
Wednesday, August 11, 2004 11:00 a.m. PST
Interim Maintenance II Day 3
Yeah McKayla's counts were better so she was able to start Interim Maintenance. Her ANC was 1480, platelets 546,000, and HGB 12.1. She received her lp and oral methotrexate on Monday. She has been vomiting the last couple of nights and have stomach aches. She is also on the steroids (Decadron) again so she is already having mood swings and has been feeling icky.
I took her and Kasey to the movies yesterday to see the new Hilary Duff movie. We had a good time and their grandma and grandpa decided to join us! The kids were very excited since this is the first time their grandparents have gone somewhere like this with them!!! After the movies I took Kasey to the doctor for an eye infection. Poor kids, we haven't been out in so long that they were so excited to see the pediatrician they were hyper! You would od thought we were going to Disneyland or something! Kasey has an appointment scheduled with the new urologist to see if they can help her with her kidney problems. I have requested a referral to the nephrologist since her kidneys are the organs that are abnormal, but they said we have to go to the urologist first. I am praying that it is nothing serious!
Danny's back is still bothering him, so he is not able to work like he was before. I can't wait until 2005, because 2004 just hasn't been our year!!!
Please continue to pray for our family and thank you to all the wonderful people around us, without you, this journey would be even more difficult! Thanks Kirsten and Candice for donating blood! You guys are the greatest!!!!! Please sign the gusetbook we love to hear from you and McKayla likes to me to read them to her!
Saturday, August 7, 2004 8:00 PM PST
McKayla continues to feel a little better each day! Today we just relaxed around the house and did some arts and crafts. It is so nice for her to have this little break from the chemo drugs. She is still taking Bactrim on Friday, Saturday, and Sunday. We have been preparing for school and McKayla is so excited to start Kindergarten this year! She is very anxious to learn. It is great to see her full of energy even if she tires out so easily and her heart is still beating rapidly. Her foot is still swollen so she will have an MRI on Monday. McKayla will be seen at the clinic on Monday and if her counts are good she will start Interim Maintenance II with a Lumbar Puncture and chemo.
We are so blessed to have wonderful people thinking of us. I cannot express enough gratitude to you guys! A Special thanks to A group of Friends, you have been so wonderful. The girls loved the flowers, balloons and stuffed bear. The delivery was the highlight of our Saturday afternoon. It raises their spirits so much when they know people are thinking of them and their laughter is so refreshing. Thank you to Alexandria La Nier for the wonderful box of fairy goodies! The girls loved everything! Alexandria is a very talented photographer, costume design artist, and last year she was the fairy lady for Mckayla's 4th birthday party which was about a month prior to her diagnosis. The kids had a blast! Mckayla still talks about it. Alexandria was so nice that after she found out about McKayla she and another "fairy" came to the hospital and put on another party for McKayla in her hospital room. Even though McKayla was out of it because she had Benedryl for an allergic reaction, she was so happy the fairies came to see her! Thank you to our sweet little neighbor Jenesy, who made a cute notebook for McKayla. Thank you to all of you who pray for McKayla and our family! Thank you God for all of the wonderful people and for your healing grace.
Danny is still suffering with his back and I am very worried about the loss of income. Please pray for him to have a speedy recovery!
Thursday, August 5, 2004 10:30 pm PST
We went to the clinic on Monday but McKayla's counts were not good enough to being Interim Maintenance. Her platelets were 294,000, a big jump from a week ago. Her ANC was only 340 so she still doesn't have immunity. Her HGB is 9 and hopefully will increase because she is still looking pale. We go to the clinic again next Monday.
McKayla also had xrays on Monday on her swollen foot. Next week she will have an MRI. She also has another rash this time all over her scalp and nose.
Danny is still having back problems. He also had an MRI this week. Please keep both of them in your prayers this week.
A special thanks to Ray and Elaine for the great goody bag. McKayla loves playing with the Scooby Doo set. Now she knows how to play checkers and she is pretty good! She loves to jump the other player's pieces and take them! She also had a great time doing the sand art!
Friday, July 30, 2004 10:00 p.m.
McKayla is feeling better today except for her cough and her swollen foot. She is so full of energy and life! She is still a little pale, but I can see that she is feeling better. She will start Interim Maintenance II next Monday if her counts are good.
McKayla is sprouting some new hair on her head already! She is so excited. She can't wait to have her hair back! McKayla is also starting Kindergarten this year. She is so ready! She is growing up so fast!
Today McKayla and I went for a walk in the neighborhood. McKayla rode in her stroller. It was so nice! The weather was perfect. It was just so nice to be outside because we have been stuck in the house!
Thank you to everyone who have sent cards and presents to McKayla. Thanks to our neighbor, Nora, for the goody basket and thanks to the Lara family for the bake set!
OTHER FAMILY NEWS: Danny has been in extreme pain due to his back injury. He has been to the hospital and the doctor. He hasn't been able to work. He goes for a MRI on Monday. Please keep Danny and our family in your prayers. Hopefully he will be able to return to work soon!
Tuesday, July 27, 2004 1:09 PST
Delayed Intensification day 47
Sunday we ended up in the ER McKayla had bleeding from the rectum. She has a lot of Petichaie (sp?) and bruising. The doctor felt that she was stable enough that we were able to go home. Her platelets had increased to 35,000 from 18,000 on Friday. Her ANC is 300 and it was 100 on Friday. Her HGB was 9.4 up from 5.3 after the transfusion on Friday. I have been a nervous wreck watching McKayla's every move due to the low platelets. We have been told that she can have spontaneous hemorraging at these low levels! I can't wait for this part of treatment to be over. I want to get to maintenance! We are hoping her levels are rebounding.
Thank You to our special group of friends who sent flowers, balloons, and a toy to Kasey and McKayla. Thanks to Aunt Marlene for dinner the other night. Thanks to Jim and Kris for the cd and lithographs! Thanks to my mom's customer for the movie. We appreciate everything and are truly blessed that we have wonderful people in our life!
Friday, July 23, 2004 11:20 PM PST
Delayed Intensification Day 43
If you are able, please consider donating blood. At CHLA you can donate blood specifically for McKayla. Call 323-660-2450 for more information. She will most likely have several more blood and platelet transfusions. If you do donate blood for her let us know so we can request it next time she is in need of blood. Thanks!
McKayla is still sick. She has a cough and sinus congestion. She has been sick since Sunday night. We went to the clinic today and didn't get home until 8:00 p.m. I wanted her levels checked because she looked pale, she was tired, was having headaches, and her heart rate was fast. Her HGB was 5.3, so she received a transfusion today. It is amazing how she can go in there without absolutely any color in her face, lips and mouth, receive a transfusion, and leave with pink lips. Her ANC is only 100 (neutropenic)so there is a concern about McKayla being able to fight off this cold, but so far no fever. She also has low platelets--only 18,000- but at our clinic they do not do platelets until there is a serious bleed. I tried to convince them to give them to her. She has bruising from her shoe, from the blood pressure cuff, and numerous other bruises, but they still wanted to wait. They are worried if they give them now, she might have a reaction to them when she really needs them. She is schedule to start Interim Maintenance II on August 2nd if her levels are good. Please pray for her during this time.
It is also our 10th wedding anniversary today. We didn't really get to celebrate since I was at the clinic all day with McKayla. Danny wrote a nice song for me and played it on the guitar. He also wrote me a little note in calligraphy. We are going to try to celebrate when her levels get better.
We would like to thank those people who pray for and/or have sent gifts and cards to McKayla including Aunt Lori, thanks for the games. The Dumlao family, thanks so much for the dolls, card, picture, color wonder markers and coloring books. Melanie and Kathi thanks for the hats McKayla loves them. We are so blessed to have such wonderful people in our life! It means so much to us.
Tuesday, July 20, 2004 1:47 AM PST
Delayed Intensification Day 42
McKayla finished her last ARAC shot on Sunday! Yay! We were so happy. She is now starting to try to catch a cold. She has a scratchy, sore throat, a lot of sinus congestion and a dry cough. I am not sleepy because of it. She doesn't have a fever! I am hoping it stays that way! McKayla takes her last 6tg tonight. Please pray for McKayla right now. Her counts could be low after all the ARAC and Cytoxin. If you would like to send McKayla something in the mail, please email me for the address.
Thanks to everyone who is checking on her and who have sent her something. We appreciate you so much. It gets very lonely staying at home and McKayla loves knowing that there are family and friends out there thinking of her!
Saturday, July 10, 2004 9:44 AM CDT
Thank you to the wonderful group of friends who sent the flowers, balloons, and giraffe to Kasey and McKayla they were so excited! I will try to add pictures shortly, I am not the technical genius I would like to be! I am trying to figure out how to put music on her site, she has received the sweetest song from Songs of Love, Thank You! McKayla also received her Taybear at the hospital which she absolutely loves! Thank You Regina for the cute hat! McKayla is very happy about all the nice people thinking of her and praying for her!
The insurance came through for us, yay! A nurse comes out to give the injections. McKayla, who is fearless with the IVs has become terrified of the shots no matter how we try to comfort her. I am so glad we only have 5 left. She is just so tired of being sick!!! It's hard to be four and deal with all this.
Thursday, July 8, 2004 8:00 A.M.
Delayed Intensification Day 29
So far this has been a very busy week! The good news is McKayla hasn't had a fever since Saturday! We had a calm 4th of July at home. We did drive over to where we could watch the fireworks, we also went for a walk with McKayla in the new stroller, and ate 4th of July cupcakes. On Tuesday, we went in for McKayla's treatment. She received Methotrexate in the spine and was supposed to receive Cytoxan via IV. She wasn't able to because she was too dehydrated and even with the IV she wasn't hydrated enough. (Cytoxan can cause kidney damage a condition called Cystitis Hemarrogia (sp) which means hemorraging of the bladder if she is not hydrated enough. So we stayed there all day but were sent home with the IV in place and told to come back the next morning. Wednesday, we went again and we had a great space all to our own with cable t.v.! McKayla was so happy as we do not have cable right now! She received ove a liter of fluid via IV and was still not really urinating until around 4:00 p.m. Her urine tested fine so she was able to receive the Cytoxan. She was feeling great after all the fluids! She is also taking a new medication, 6tg at night. She woke up early this morning after vomiting in her bed at 4:00 a.m. and seemed really out of it, poor girl! I gave her Zofran for the nausea and a bowl of cereal. Hopefully when she wakes up this morning, she will feel better.
Today we again have to make the long commute down to L.A. because McKayla is starting her series of ARAC injections and the first of eight has to be given at the clinic. The rest are suppose to be given by a nurse at home but my insurance is giving the hospital a hard time so I do not know how this is going to work out. I may be driving down to the hospital every day!
I will be adding some new pictures of McKayla receiving her box from Basket of Hope! She was so excited when it arrived! Thank you to all of you who have sent something and for your prayers!
Thursday, July 1, 2004 10:23 PM PST
Delayed Intensification Day 24
Sorry that I haven't written sooner but it has been a rough week. McKayla saw the doctor on Monday and everything is looking good. her ANC was over 4000! Her HGB and platlets were in normal. While we were there McKayla was hurting really bad from sitting in her wheelchair. She was so weak that she couldn't hold her neck up and her back and behind were hurting as well. She wanted to lay down and the nurse said there wasn't a room available but she changed her mind when she looked at McKayla and could see and hear how much pain she was in. McKayla was able to lay down in the examining room and the second she did she fell fast asleep. It was horrible to see her in such pain. I am going to try to buy her a carriage this week to enable to lay down when she is tired for those long clinic days. If she has good levels on Tuesday, July 6th, then she will start on the other treatment that I mentioned in the previous journal entry.
She finished the Decadron on this Tuesday! I am so happy!!!
Today was a good day besides the fact that McKayla is running a low grade fever. We are monitoring her every couple of hours to see if it gets to 100.4 because if it does she will have to go to the hospital. McKayla went to physical therapy today. She hasn't been able to go for a couple of weeks because she has been so ill from the chemo. She was so happy, but she wore herself out a little too much. She was happy to see Natalie. She loves to play with her!
McKayla has been very depressed because her hair has been falling out. Today is was so sparse that she agreed to let my mom shave it to even it out. I am posting new pictures please check them out!
Guess What? Make-a-wish is coming to our house this Saturday as long as McKayla isn't in the hospital! I don't know what McKayla will be asking for except I know its a vacation and beach time! She would like to visit Disneyworld, go to the Atlantis resort (she has seen pictures of it from someone who went there), or Hawaii.
McKayla has been checking the mailbox for mail, so if you can please mail her a card, stickers, or gift. It really helps with her depression when she receives something! Please sign her guestbook because I read them to her and I am going to print them out for her scrapbook!
Sunday, June 27, 2004 9:35 PM PST
Delayed Intensification, Day 19
Today was an O.K. day for McKayla. She has been feeling sick over the past few days and very lethargic. Her pain comes and goes. She seems to be trying to control the mood swings the best that she can! She is such a sweet loving child. This weekend her hair has been coming out. It hadn't come out before we had been so blessed. If it does come out, I think she will handle it better than if it had happened in the beginning. This makes me very sad because McKayla loves to have her hair brushed. Tomorrow she has a clinic appointment. She is supposed to have blood tests and see the doctor. If her counts are good then she will start the second intense phase which includes Cytoxan, ARAC, and Thioguanine. She will also have a spinal procedure.
When I check the mail each day McKayla has been asking if she got anything. If anyone has a chance, please send her a card, stickers, or a gift, it really helps to keep her spirits up!
Wednesday, June 23, 2004 7: 12 PM CDT
Today so far has been a pretty good day. McKayla felt well enough to play with her sister, go to Grandma and Grandpa's, and to the neighbors house to play with her friends Jeanie and Julian. She is walk funny which I contribute to the Vincristine. It is not the toe walking that we have seen before, but more of "sloppy" type of walk. It could be from her extremely distended stomach. We were so happy that she felt like playing with Kasey. They actually got along most of the day. This has not occurred in so long! Please sign the guestbook, McKayla likes to know people are thinking of her! Also, check out the new pics under photo album.
Monday, June 21, 2004 8:09 PM PST
Delayed Intensification Day 14
Another long day at the clinic. We left at 7:30 am and got home at 6:45 pm. McKayla wasn't feeling well so even though she wanted to be in the playroom, she didn't want to do anything. The day started with McKayla wanting Taco Bell for breakfast and nothing else! I finally had to call Taco Bell and see what time they opened. We were in luck they open at 7:00 a.m. in case anyone else needs to know and they close at 1:00 a.m. Taco Bell is McKayla's new craving. So after a trip through Taco Bell we went the hospital. We got there and the nurse put in McKayla's IV and we waited for the lab results. We saw Dr. Gaynon and her labs were good-- platlets 372, hgb 13.7, and Neut 1040. Neut are a little low and the doctor stated he wants her to stay isolated based on the fact she received Doxorubicin and Vincristine today. McKayla also will continue to take Decardron until the 22nd of this month so seven more days. He also gave McKayla a prescription for Tylenol with Codeine to help ease the pain. She also still has a rash on her back which she has Nystatin ointment for. Hopefully this week with go by fast and then she will be off Decadron. Please continue to pray for her during this difficult time!
Sunday, June 20, 2004 9:27 AM PST
Delayed Intensification Day 12
It's been a rough 19 hours! McKayla has been in a lot of pain, itchy and uncomfortable, so hungry and moody, rash, can't sleep, but she is so tired. I think the Decadron makes her extremely anxious! Her poor belly is so swollen from the Decadron. My poor baby! Last night she was telling me again that she is falling to pieces and there is nothing I can do for her. She was hurting and I called the Hem/Onc doc on call. She said that she should just continue on the Tylenol and maybe we could try Tylenol with Codeine in the future but constipation is a side effect. I feel bad for Kasey too. I know she feels so ignored. I want to thank everyone for signing the guestbook. McKayla loves to have me read her messages to her. She likes to know people are thinking of her. Our lives have changes so much with this diagnosis.
Saturday, June 19, 2004 11:22 a.m. PST
McKayla is learning how to write her first and last name! Big girl! Today she is trying to learn how to spell her sister's name too! She is being so sweet today! She made pictures for Kasey and I that say I love you on them. Then she taped them to our bedroom doors! Kasey hasn't seen it yet because she went to spend the night at grandma's. As far as treatment, McKayla is having definate side effects from the Decadron. Mood swings, insomnia, pain, and extreme hunger constantly! But still she is doing O.K. And today, she is in a good mood overall! Yeah! Our next doctor's appointment is this Monday, she will be receiving Doxorubicin and Vincristine by IV push. She will be on Decadron until the 29th. Thanks to all of you for your prayers!
Thursday, June 17, 2004 4:28 PM PST
McKayla is feeling a little better today. She is also in better spirits! Praise God! Decadron can make her have the most terrible mood swings. She has been having a lot of side effects and has been up at night a lot which means all of us are tired during the day. I am very worried about her. Today she seemed more comfortable but more tired during the day. Please pray for McKayla and our family during this difficult time.
Monday, June 14, 2004 9:00 p.m.
We had another long day at the clinic today. McKayla's levels were good so she received Vincristine and Doxyrubicin by IV push. She has been having a lot of side effects and she gets very tired when we are at the clinic. She didn't sleep last night and kept me awake so I was very tired too. She is so sweet most of the time though. Today she wanted salad for lunch and was so happy for it she was giving me kisses. She wanted the same salad for dinner so we bought another one before we left the hospital and she ate it when we got home.
McKayla is very strong in faith and tonight she was praying and said, "Dear Jesus, Please make me all better fast, because I am tired of having Leukemia."
Thank you to everyone for all your prayers!
God Bless!
Saturday, June 12, 2004 2:43 p.m. PST
This has been a very busy week for McKayla. On Tuesday, June 8th her levels were good--ANC 1300, RBC and Platlets within normal range. Delayed Intensification was started. She received Methotrexate in her spinal fluid and IV push of Vincristine and Doxyrubicin. They gave her Zofran to combat nausea. On Friday, June 11th, they gave her Peg shots in both thighs. They hurt really bad and McKayla was already not feeling well. She had to have a finger prick because she is having problems with bladder control and she couldn't give a urine sample. Her sugar was elevated so they said maybe we should watch her sugar intake. She has been having difficulty walking, thinking, a slight rash, pain and tingling in her extremities and sudden pains in different locations. She also smells things that are not there and usually blames Daddy or Kasey for being stinky. She has also been having stomach aches and threw up last night. The Decadron causes her to have extreme mood swings as well. McKayla has been getting a lot of use out the wheelchair. Thanks again to our friends! I am going to try to get together money to buy her a large sort of pram by Bertini. Yesterday, when we were at the day hospital they did not have any rooms available and McKayla wanted to lay down she was feeling weak and tired, but there was no where to lay down and the waiting room is incredibly small, so there is limited seating. She doesn't fit into her stroller anymore. We have another appointment on Monday for more chemo so please keep McKayla in your prayers. Even with the side effects she is doing pretty well so far.
God Bless!
Thursday, June 2, 2004 7:00 p.m.
McKayla was very tired all day I hope she isn't coming down with a cold! She is very interested in reading right now so we have been reading every children's book in the house! Maybe she will take after her big sister Kasey who is an avid reader. She is just finishing the fourth book in the Harry Potter series. A special thank you to our friends for the special gift! It is very much appreciated! God Bless!
Tuesday, June 1, 2004 4:21 P.M.
We went to the clinic this morning and found out McKayla's levels are too low to start Delayed Intensification this week so we are going to try again next week. So she gets an extra week off. Please continue to pray for her, I know all the prayers are helping!
Saturday, May 29, 2004 10:18 PM CDT
McKayla is doing well and wanted to wish everyone a Happy Memorial Day Weekend! Please remember to pray for McKayla on June 1st as she starts Delayed Intensification!
God Bless!
Thursday, May 27, 2004 10:07 a.m.
Hi everyone,
Thanks for all your prayers and well wishes! McKayla is doing fairly well and she had her first PT yesterday. She really liked it. She has a very nice person who helps her there named Natalie. She played kick ball, did different balancing and strengthening exercises which Natalie made totally fun for her. She didn't want to leave. Today we are going to Kasey's end of the school year party. Then she will be out for summer! I can't believe she will be in 4th grade next year. We have a few things we would like to put on our wish list:
1. Gift Certificates to
Stater Brothers, Vons or Trader Joe's
2. Huggies wipes and pull ups
4t ( McKayla is allergic to other
brands)She wears them at night now
because of the weakness.
I might be having a garage sale this weekend so I will keep everyone posted! Thanks and God Bless!
Tuesday, May 25, 2004 12:46 PST
Wow it's a new day and I still can't sleep! All this anxiety over Delayed Intensification is really getting to me! McKayla has been feeling pretty good with exception to losing balance and being a little tired. Tonight we spent time at Kasey's school for the graduation and promotion ceremony. McKayla can't wait to start school. I've arranged it to where I can go to school with her so I am there in case she needs me. She is very excited to take violin lessons like her sister, Kasey! She starts PT this Wednesday so I hope to see progress. Please continue to keep us in your prayers and sign the guestbook she loves it when I read them to her!
Monday, May 24, 2004 6:51 PM CDT
McKayla had a busy day today. we went to the park and she had a blast except for when a little girl pushed her and she fell off the stair and landed on her head! Talk about a heart attack! Fortunately, she is fine. Tonight we are going to go to an awards ceremony for Kasey's school. Thank you to all of you who are asking how you can help. I will be posting a wish list of items and help needed in the near future. We will be having a yard sale soon and may be starting an account for donations to help with the expenses of her care. Thank you to all of you who are keeping us in your prayers! I know that your prayers are helping! God Bless!
Friday, May 14, 2004
Hi everyone. Everything is going pretty well. McKayla's authorization for a wheelchair and for blood work to be done at Children's hospital are approved now! I am so relieved. McKayla went for her PT consult and will be receiving PT one to two times a week. She probably won't be able to go once she starts Delayed Intensification on June 1st. Thank you for continuing to pray for McKayla and our family.
God Bless!
Friday, May 14, 2004
Today was definately a trying one. I guess the IPA that our insurance contracts with denied McKayla's wheelchair rental, and are thinking of denying her bloodwork authorization for children's hospital. I have written them a very detailed letter as well as the case manager at the hospital explaining to them how important it is to have the bloodwork done there the same day of treatment, hopefully things will work out. McKayla is doing pretty well. She is supposed to start physical therapy soon to deal with the loss of strength and coordination. Her doctor at Children's hospital requested to have therapy done there but it was denied and she will be going locally. I am glad though, because the drive done there is taxing. Today she fell four times. She just loses her balance. She also has been getting more tired this week. Maybe she just wants an excuse to get into her new bed! We are going to paint her room lavendar this week, since her favorite color is purple. She wanted to have a fairy princess theme. She loves fairies, princesses, and castles. Thank you for all the prayers and for signing the guest book! Please continue to pray for McKayla and for our family.
God Bless!
Monday, May 10, 2004 10:00 p.m. PST
Interim Maintenance day 35
We had an appointment with Dr. Gaynon today. McKayla's levels were good. Her ANC was over 4000 and hemoglobin and platelets continue to be in normal range. She has finished the Decadron but the side effects continue to linger. She still has swelling in her face and has been irritable. The side effects from the Vincristine are also still present-- the pain in the jaw, legs and hips. McKayla was feeling pretty good at the clinic and she was showing off her cute outfit and her hair to all the nurses and doctors. They are really nice there and McKayla loves to socialize. She likes the playroom a lot. Her favorite person in the playroom is Misti. She cried when we left the doctor's office because she wanted to play in the playroom more. Dr. Gaynon hadn't seen McKayla since her first couple of weeks of treatment because he was off on medical leave and when her saw her he was amazed that she had all her hair and looked so good! I am not looking forward to the next phase of treatment. I wish we could skip over it. It is very intense and I am worried about the side effects. She will begin the new treatment June 1, 2004. Please continue to pray for her and for our family!
Thursday, May 6, 2004 5:00PM PST
Interim Maintenance day 30
Please sign our guest book! McKayla likes me to read them to her. The last two days have been a little rough. McKayla has been having a lot of side effects including insomnia, irritability, stomach pain, leg and joint pain, and headaches. Last night she awoke with a tummy ache. I think I only got two hours of sleep! McKayla is so sweet, I was feeling sick today so she was hugging me she said, "to make me all better." Even with all the side effects her sweet spirit continues to shine through! I am so thankful that God chose me to be McKayla's mommy! Please continue to pray for McKayla.
God Bless.
Monday, May 3, 2004 10:00 p.m.
Day 28 Interim Maintenance 1
Just got back from a long day at the clinic! We left early this morning and arrived at the clinic at 9:00 a.m. McKayla was not able to eat until after her Procedure (Lumbar puncture and sedation) and that wasn't until around 12:30 p.m. We finally ate at 1:45 p.m. and saw the doctor at 2:00 p.m. We saw Dr. Madigan because Dr. Gaynon was not there today. McKayla's hemoglobin and platelets are within normal range. Her ANC is 1620. McKayla's blood test did show that her liver and kidneys are working hard. The medication takes a toll on them.
McKayla was happy to go to the playroom. She played Play-Doh did arts and crafts, painted, played with the doll house, and did medical play. Everyone always comments on how happy McKayla is. She is always singing and smiling. She is a very positive person. She doesn't have a port or line, so she gets an IV everytime and does well with it. She doesn't however, like the lab and has a very hard time when she has to go there. The nurses draw her blood out of her IV.
McKayla will be getting a Physical Therapy consult because she is having a lot of weakness in her upper legs and hips. She received her Vincristine today and on the way home started having pain in her jaw and hips. Please continue to pray for McKayla and our family. We are going through a difficult time right now. McKayla will be starting Delayed Intensification in the next couple of weeks. As the name implies this is a very intense phase. This means that there will be more side effects, and more isolation because of low counts. At least this weekend, we were able to take McKayla to Disneyland, she has been asking to go since she was first hospitalized. We just stayed for a couple of hours but it wasn't busy so she was able to go on several rides. Our friends Kristin, Candice, Kera, and Amber were able to go with us which made it even more fun!!!!
Just one more note before I close. Her sister Kasey received her first communion on Sunday!
Please keep McKayla in your prayers! God Bless!
Monday, May 3, 2004 1:30 AM CDT
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