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Thursday, December 7, 2006 8:46 AM CST

Just a quick update to Melissa's page...

She and Alivia both celebrated birthdays in November, and Jeni opted to have a joint birthday party for them. Grandma Dee and Papa Don opened their house up for the occasion, and we all had a good time. The girls got LOTS of gifts and each had their own birthday cake.

Melissa loves Kindergarten. She is very helpful and concerned about the welfare of the other students. Her class had a pajama party last week because they had met the goal of thirty "tally marks". I asked her how they got tally marks and she told me they got one each time they were "responsible". We attended her Christmas program and she did a good job in front of the audience...they sang three songs.

On the other side of the coin Melissa is behind the others in her class academically. She is struggling with her letter recognition, writing, and phonics. We understand this because she lost almost a year of normalcy treating her cancer. She is getting additional help in school and Jeni is working with her at home. I try to work with her the few times that I have her...Papa Bob says his job is to play with her. No wonder she likes to spend time with him!

On the 11th she goes in for oral surgery to have her five lower front teeth pulled. Her permanent teeth are coming in and her dentist says her baby teeth are "lazy" and will not fall out. She did lose one at school last week as some of them are very loose. She has three permanent ones already through on the bottom...we are waiting for her front teeth to come in as she had those pulled a while ago.

January 8th she goes to Iowa City for a return visit with the radiation doctor to check her growth. Other than that we are looking at a return for scans sometime the end of March or the first of April.

Please continue to keep her in your prayers. Also pray for the researchers who are trying to find a cure for this and all cancers.

Best wishes for a blessed Christmas and a peaceful New Year!

Jeni, Doug and Girls

Monday, October 2, 2006 9:41 AM CDT

Hi once again from Grandma Nancy,

Just wanted to update about Melissa's scans. She had to be in Iowa City Thursday the 28th for a "pre surgery" physical. This was done because she gets anesthesia before her scans. Friday morning she had her IV placed (she cried) and was injected for her bone scan. She cried again when she went back for her bone scan. This is why she needs to be put under for these scans...she is so afraid of all of them. Dr. Tannous looked at her scans before they came home and said that they looked clean. YEAH!! So it looks like we will have scans again in 6 months unless a new problem arises.

Papa and I were in Minnesota on the day of her scans, but she called us when they were on their way home. She said she was "Good" but that she was dizzy. In the course of the conversation I asked her if she was going to play T-ball next summer, and she said "Maybe, if I'm not still dizzy."

She loves school and as I have found about most kindergarteners her favorite thing about school is recess. When you ask her what she did today her answer is "Stuff".

She weighed 37#s at her physical. Jeni says she is getting a tummy on her. This concerns us as her tummy was the first indication of her disease, but since her scans are clean we can only hope that she is finally starting to gain some of her normal weight.

That's about it for now. Please continue to keep her in your prayers.

Love, Grandma

Friday, August 25, 2006 3:36 PM CDT

Well, here we are again...two months since the last entry. Jeni is "way" busy and stressed out so Grandma is once again making the entry.

Melissa had a good summer. She finished T-ball and didn't want it to be over. The end of July she took her first swimming lessons. She loved going to the pool but did not pass the class as she is afraid to put her head under the water. (We are staying at a motel with a pool over Labor Day weekend and her mom and dad and Papa are planning on working with her to get her over her fear.)

On August 17 she was invited to a Build-A-Bear Party at Coral Ridge Mall. The party was made possible for the oncology patients at Children's Hospital of Iowa by fundraising efforts of The Bicycle Racing Clubs of Iowa. There were alot of kids there and they all had a good time. It was good to see some of the moms and kids that we knew when we were in the hospital...we even got to see Mary! Melissa made it into some of the news footage for KCRG-TV. We have promised her that we will go back again so that she can have a purple bear, as purple is now her favorite color (it was her mom's favorite color too).

She started kindergarten on August 21st and so far she likes it. She went half days the first three days and then has gone all day yesterday and today. I think it was harder for me to see her go to school than it was for me to have her mom go. It is great though to have her experience one more thing in her life.

We are thinking that she should be due for scans in September but have not heard anything from IC. We will keep you posted on the outcome of those.

Alivia is growing by leaps and bounds. She is crawling everywhere and is too smart for her own good. She loves to eat and is not picky at all...quite a change from a cancer kid.

Jeni and Doug are "hanging in there". Please remember them in your prayers (especially Melissa) as they face what God has in store for them.

Love, Grandma Nancy

Saturday, June 24, 2006 6:15 AM CDT

WOW! Where has the time gone? I can't believe June is almost over. It seems like a lot has happened since the last journal entry.

In March Melissa's great uncle Dennis (my brother) passed away from cancer. He was diagnosed the end of January and died on March 5th. Melissa did really well at the visitation and the funeral. She knows that she has cancer and is trying to understand how she is surviving while others do not. She also knows that there is the possibility that her cancer will come back...it's alot for a five year old mind to comprehend. We don't dwell on it and take each day as it comes.

She enjoyed her year in preschool. I think it did her a world of good and has helped prepare her for kindergarten this fall. She graduated on May 24th. Check out the new picture posted. All of the kids were so adorable in their caps and gowns.

She is playing T-ball this summer. She has practice once a week with a game on Saturday. She has two weeks left. It has been good for her to be involved in this. She is getting the social end of it as well as the physical end. It is also good for us to see her in this setting as we can compare how she is developing to the non-cancer kids. She is not too bad. I think she gets tired, but like Dr. DePaulo said when she was fighting for her life in the PICU, "She's a tough little cookie." Again check out the picture posted.

She will be taking swimming lessons later this summer and I think she is excited about that. Bob and I have talked about taking her for a weekend to a motel with a pool and she is still asking about that so I guess she will hold us to that idea.

Alivia is growing and changing every day...again check the new pictures. Melissa loves her a great deal.

On June 2nd I participated in the Chickasaw County Relay for Life on a team dedicated to my brother and his girlfriend. Sharon has been fighting ovarian cancer for 5 years. On June 9th Melissa walked the survivor lap at the BlackHawk County Relay for Life with her Greatgrandma Nina who has survived uterine cancer. She also walked with the team that Nina was on. (I don't have my pictures back from that yet, but will post them when I can.)

In retrospect, it is amazing that 5 years ago cancer was a disease that was out there but did not really affect my life. Now I have been affected by Sharon, Melissa, my mother-in-law Nina, my brother-in-law Clyde, Dennis, and most recently my brother-in-law Jim, not to mention all of the other aunts, uncles and cousins who have fought this disease. Hopefully someday research will come even further toward a cure. We can all work toward that goal.

Have a great day! I will try to keep this updated more frequently. Thanks for your continued prayers for Melissa and for all who's lives have been affected by cancer.

Love, Grandma Nancy

Tuesday, March 14, 2006 3:19 PM CST

Hi!

This will be a real quick note...Melissa had her 6 month scans on March 9th. She did pretty good with the whole procedure. She was put under for the scans and did not like having the IV put in. Then when it was time for the CT Jeni had to carry her into the room because she did not want to have the test. Once in the room she went under really fast and remained out for both the CT and bone scan. She came out of the anesthesia really well and managed to "ride the escalator" three times with Papa on our way out of the hospital. She also had a pretty good appetite when we stopped at the McDonald's by the Cedar Rapids airport.

The results of the scans are not official yet. Preliminary reports are that everything looks like it did 6 months ago. Dr. Vibikhar was to call Jeni on Friday but did not,so we are assuming that everything is cool. She will get a written report as to the results of the scans, blood tests and urine test. The issues that have always been there (i.e. the calcification on her kidneys and the scarring at the site of her port) are the same. If there is any major news when we get the report we will let you know.

It was nice to see some of the nurses that were with us during our hospital time...so much has changed since we were there...personally I prefer the 3rd floor over the 7th floor, but I know that they will be back there in a few months. And of course, we had to make a trip to the PICU to see Bob.

That's about it for now. Keep us in your prayers.

Love, Melissa and Grandma


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Tuesday, February 14, 2006 9:20 AM CST

HAPPY VALENTINE'S DAY!

Melissa and Grandma are on the computer this morning and have decided that Melissa needs an update on her page.

She is good. She has been dealing with a cold these last few weeks, but with this weather who isn't. She also had a dental appointment where she was put under to have her teeth cleaned and a couple of fillings done. She has her first loose tooth and the dentist left that to fall out on its own...a new experience for her since her other teeth that are gone were surgically removed. She is curious about when her front teeth will come in and it could be a year or more. Frankly, we are so used to her without her teeth that it will be strange to see her with them.

She likes preschool and I can see improvements in her skills, but she still has a lot of things to work on. She really likes her baby sister and Alivia is quite tolerant of all the "attention" that she recieves.

We are both anxious for spring and warm weather to come so that she can get outside. Right now we have to move the chairs in the kitchen so that Melissa can ride her bike around and around the table. She thinks the kitchen should be bigger and I tell her that it wasn't meant to be a bike trail.

She goes to daycare on the days that she has preschool and she really loves her sitter and the kids that are there.

Thanks to all who continue to check on us and who are keeping us in your prayers. Two plus years until she is considered in remission...so keep us on your prayer list.

Melissa says...hgjfjjffhhfgjfjgfgfhfhjfjgjjgjjgjjjjjjgjjjjgj.
Translation...I like my family and I love my baby sister and I go to McDonald's and eat with my family all the time.

Love, Melissa and Grandma Nancy

Sunday, December 4, 2005 4:00 PM CST

Hello to all that are still checking our website and progress.

Sorry it's been so long since the last entry but alot has happened.

First of all Melissa just turned the big 5 on November 24 how exciting to have your birthday on Thanksgiving other than the family is already all together. We just had a radiation therapy check up on Thursday and all is fine, as we thought it would be we'll see Dr. Buatti again in a year. School has been going great until Thanksgiving that is when we found out that a girl in Melissa's class was diagnosed with hepatoblastoma that originates in the liver. She has taken up the new found residency at the UIHC "black hospital" her name is Leah (http://ristaufamily.blogspot.com/), so if you can please put her on your prayer list we have. How strange to have two children in the same preschool class both diagnosed with cancer, but she is also a fighter just like Melissa so hopefully her outcome is the same as ours--Cancer Free for almost 3 Years (in April).

Now for the new news in our lives---Doug and I had a little girl Alivia Mae on November 10 at 8:33am weighing in at 8lbs 7.8oz and 20 inches long, although that didn't last for long she now weighs almost 9 and 1/2 pounds, talk about a great eater, of course she comes by that honestly. What a doll, although what were we thinking having another child 5 years after the middle one and 20 years after Doug's first one, but oh well we're managing and coping to the change in lifestyle and wouldn't trade her for the world. New Melissa and Alivia Pictures will be added within the next few days. So check back to see how big they both are.

Thank you and keep praying for us it is working also keep in mind our friend Leah she also needs the prayers in her time of need.

Love to all--
Jeni and Doug

Friday, October 28, 2005 10:24 AM CDT

Melissa wanted to say HAPPY HALLOWEEN to everyone! We just finished baking some halloween cookies and are waiting for them to cool so we can decorate them.

She is doing well. She has been to her local doctor and gotten her flu shot and will go back in November for her immunizations that she is still catching up on after transplant. She loves preschool and really enjoyed her field trip to Heritage Farms. Yesterday her class visited the senior center and entertained the residents with several songs.

We are looking forward to her 5th birthday on November 24th, but first she will become a big sister on November 10th. So many new things to become adjusted too...

Melissa wants to add her own note...

thank you for praying me...I love you all.

Love, Melissa and Grandma Nancy

Wednesday, September 28, 2005 7:23 AM CDT

Jeni is pretty busy these days with new baby preparations...her delivery date is November 10th...so I will update Melissa's page.

Melissa had her CT and bone scans on September 22. Both of them came back clean. Her CT showed that she still has a blood clot in her kidney, but it hasn't grown and Dr. V says that it looks like the core is getting smaller which is a good thing. Her heart does have an abnormality in the aortic valve, but that is something that she was born with and that can be monitored as we go along. She will continue to have scans every 6 months until she has been cancer free for the magical 5 years.

She started preschool on Sept. 7th and really loves it. They had their first field trip a week ago (went to the teacher's houses) and next week they will go to the fire station. She really likes the field trips. She also loves her new daycare...there are kids there to play with.

Not much else is new with us and in this case no news is good news. Please keep the prayers coming her way...they are greatly appreciated.

Grandma Nancy

Wednesday, August 17, 2005 6:39 PM CDT

Hello to everyone who has checked on us since April and has not seen an updated entry. No news is good news...right?

Melissa has had a good summer. She and Greatgrandma Pudil walked the survivor lap of the Relay for Life in Waterloo in June. Greatgrandma said that Melissa almost wore her out with the pace that she set. It was very moving for me to be there and watch them walk...hopefully I wasn't the only one with tears in my eyes.

Also in June Melissa, Jeni and Doug, and Bob and I attended the Children's Miracle Network Champions Luncheon. It was an emotional day to see some of those that we knew from our hospital stay and to remember those who are no longer with us. A lot of Melissa's great nurses now work on the weekend and since the luncheon was on Saturday we got to see some old friends both in the PICU and on 3rd floor.

Last weekend Melissa attended the Iowa State Fair with her Mom and Dad and two of their friends. Melissa got to see Clifford at the IPTV booth, rode the merry-go-round, rode the sky lift with her Dad and Danny, petted animals at the petting zoo, and took home some HUGE stuffed animals from the midway (Thank you, Danny!).

September 7th Melissa starts preschool. This will be a period of adjustment for both her and me. She will have preschool three days a week and will go to a different day care on those days. Then in November when her baby sister or brother is born she will be home with her mom while she is on maternity leave until after January 1st. At this time I will still have her two days a week.

Healthwise things have been pretty normal...a couple of colds but nothing major. Her 6 month scans should be coming up the end of September or the beginning of October...we haven't heard yet. As any parent with a cancer kid you know that you never take anything for granted and are thankful for every day that you have.

Thanks for checking in with us. Please leave a message if you can and as always keep Melissa in your prayers...they are forever appreciated!

Love, Grandma Nancy

PS...Check the new pictures

Wednesday, April 27, 2005 5:44 PM CDT

What do they call that?????? Better late than never.

This is for all of you who have been harrassing me to update Melissa's web site since the scans. (Mariah & Mom)

On March 25th we were in Iowa City for Melissa's 6 month repeat CT scan (two years post transplant. The scan was as we expected no new apparent cancer, but there was one thing that showed up that I wasn't aware of she has a calcified blood clot in her right jugular vein where her central line was located...this is quite normal in these cases.

On March 31st we had to go back to Iowa City for her bone scan, echo, audiology, and general check up with Dr. V. It took almost a week to get the results---Dr. V isn't very good about calling with results. When I called to get them Mary said everything is exactly how we want it--bone scan clean, echo within normal limits--but showed that she has a quad cusped heart which is fine it's just the way she was made, and audio was also within normal limits. Which was much to my suprise since all Melissa says is "WHAT". Now as for her general check up--they think she is too thin--She eats all the time but never stops running to let the food turn into fat (wish I had that problem). Those of you who don't now I took Mom and Bobby with me to this long day--So of course we couldn't get out of our appointment with Dr. V without mom asking questions--This time I was glad she was there to ask it--It's probably the biggest question we all have and are too afraid to ask. "Are there any survivors of neuroblastoma?" Dr. V said that there are survivors with Stage 3 (Melissa). Since at diagnosis we were only given a 40% chance at life 4 years out after transplant. Mom also asked him exactly what her diagnosis of an unfavorable histology meant. Histology has to do with the cells and their development..unfavorable meaning that the cancer cells divide and multiply faster than normal. If she would have had the tumor with a favorable histology she would have only been treated with chemo and not the stem cell transplant.

As for the rest of the family and new information to pass on.

Melissa got a new big girls bike at grandma and pappa's house and has already fallen off----she knows how to pedal really well but forgets to brake.

Chrissy is almost done with her first year of college and just recently got a job at JCPenneys and likes it.

As for Doug and I in 29 more weeks we will be parents again. Exactly 7 days before Melissa turns 5.

Sorry this update has taken so long to do but just recently have I been able to sit at the computer for extended periods of time since on April 9th I dislocated my patella (knee cap) and have had to wear a brace that doesn't allow much room for bending. Since I pregnant I can't take anything to help the healing process so it will be a long one--the doctor says maybe 2 more months. YEAH!!!

Better go for now and cook supper--

Love always--
Jeni

Sunday, March 6, 2005 2:56 PM CST

Hello again---

Not much new here. I just got online to check in on everybody and everything--I hope everyone is enjoying this beautiful warm day.

Just a quick update on Melissa's two year post transplant scan schedules. About a week ago--Steve from IA City called to check up and tell me the bad news--Since anesthesia runs the hospital they only give the cancer docs one day a week to get all of their kids scanned. So we have our scans split up into 2 different days--March 25th we have a CT w/anesthesia and on March 31st we have a Bone Scan(with chlorohydrate hopefully it works this time the last time she had it for a test it only made her look/act drunk)-Audiology test-a check up w/Hemoc docs-and last but not least we have a Echo since it's been a year since the last one. We've been talking about going to the hospital for these tests and she doesn't understand "Mom i'm not sick why do i have to go? Too make sure you aren't sick and we don't know about it. Don't worry i will tell you after i puk that i'm sick."

Oh what little kids come up with in their rational thinking. Here is a prime example of how it all works--Doug and I have talked to her about someday having a baby and she remembers being in my tummy and she got big because she ate everything I ate. "Remember Mom"

Thats all for now-- Hope we get to do some visiting while in IA City. See some of ya soon---

Love-
Jeni Doug and Melissa (hootie)

Monday, February 21, 2005 4:32 PM CST

Well is this a shock or what???

Mom(Jeni) is making the update--since grandma Nancy keeps bugging me too.

Not much new and exciting here--first of all I would like to sent our love and prayers to Trevor and Mason while they continue to fight this horrible disease again after being in remission. You both are in our daily thoughts.

Now for Miss Melissa aka hootie--she is doing great her appetite is back to normal, which is good since we go for another weight check March 14. Still no word on when our next scans are hopefully sometime end of March beginning of April--our 2 year anniversary for transplant is April 10th which is also my 10 year anniversary at work. (Weird) Just this weekend Hootie has been complaining of her back hurting when she sits in one of her car seats--and then she follows it with "I think I need a new car seat" how quaint--apparently she has been giving grandma Nancy the same speech. You know those kids with cancer tend to get what they want so I'm sure she will get a new car seat soon.

Doug and I have been playing pool league this season we both play Monday and Tuesday nights and then Doug plays on Thursday nights with the guys. So it's nice to get out of the house and find a sitter(grandma's) only 1 month to go and then we're all done.

Well I'd better get some house work done before we go to league.

Keep praying for all those disease stricken kids in the world--they need all the prayers you are willing to offer.

Love--
Jeni

Tuesday, December 28, 2004 9:26 AM CST

A Belated Merry Christmas to all and our sincere wishes for a Happy and HEALTHY New Year for all who visit our page.

Much has happened since our last journal entry. Melissa turned four on November 24th...a true blessing to all of us who worry so much about her! Her birthday was celebrated with family and friends at a local pizza place and then the following day with more family on Thanksgiving Day.

Melissa finally achieved her goal just before Christmas of becoming an official big girl and using the potty all the time. Santa was especially happy and brought her the bike that she wanted for Christmas. Papa Bob and Grandma Nancy have also promised her that they will buy her a bike to have at their house...that way she can have it all the time when the weather is nicer and she can play outside with her "best friend" who lives next door to Grandma.

Melissa has enjoyed fairly good health so far...still having nose bleed problems...but they seem to stop fairly quickly.
She goes back to Iowa City in March for scans.

I will try to get new photos on the page...it is amazing how much Melissa has grown up. If they aren't there when you read this, please come back and check on us.

Love, Melissa and Grandma Nancy

Tuesday, November 9, 2004 8:25 AM CST

Good Morning!

Just a quick update...Melissa had her dental surgery yesterday. The dentist removed her four front teeth, put two caps on two of her bottom teeth, and put in four fillings. All of her teeth that were removed came out good except for one that the root broke off on...the dentist says (and we are hoping) that her body will just break down and absorb the root...otherwise, if it gives her problems, she will need to go to an oral surgeon to have it removed. She looked pretty rough when Jeni & Doug took her home after the procedure yesterday (I think because she was still recovering from her anesthesia) but she recovered pretty quickly and had a really good appetite
and slept good all night. This morning she has had toast, spaghettios and milk for breakfast. She sure looks different with her four front teeth gone, but she will always be our precious Melissa.

Thanks for all of the prayers sent our way...it is amazing to think of everything that this little child has been through in her short life...and how blessed we are to have her in ours.

Love, Grandma Nancy and Melissa

Thursday, October 21, 2004 12:14 AM CDT

Hi! Just a quick update...Melissa developed a rash on Monday night. Tuesday morning Jeni took her to the Dr. and found out that it was what we had suspected...she had an allergic reaction to her antibiotic that she was given for her cold. She is now taking two different oral meds and has two topical creams to help the rash. By today her rash is almost completely gone.

This morning she saw her new pediatric dentist. She is scheduled for oral surgery on November 8th. She will have her four front teeth removed and two in the back capped. While she is under sedation, they will take xrays to see if any of her other teeth need to be removed. They will then do these teeth while she is there.

We have had kind of a crabby morning here. Melissa just came up to me with a paper and pen (like a shopping list) and asked me what I needed. I said "A good little girl!" and she said "I'll write that down." If only it were that easy!

Thanks for checking on us and keeping us in your prayers!

Love, Melissa and Grandma Nancy

Monday, October 11, 2004 10:57 AM CDT

Good Morning!

Melissa just got done with her visit to her local pediatrician. She got her flu shot and another shot that covers DTP, Hepatitus B, and polio. She had a hearing and vision test. She passed the hearing test but failed the vision test because she wouldn't tell them what she was looking at. (She can be really stubborn when it comes to stuff like that and if she doesn't want to "play the game" she won't.) Her weight has dropped to 29#s and she is in the 10th percentile for her age and height. She has to go back in two months for another weight check. Her dr. said that maybe she is just going to be a slender kid; but with everything that has happened to her so far, they need to find out what her maintenance weight is. I think she has lost weight recently because she has this rotten cold that won't give up. They have prescribed an antibiotic for her cold and possible sinus infection and we will still give her Dimetapp for her cough. We'll see how she does with her weight when this is cleared up. Other than that they think she is active and happy.

Jeni just told me that last night she told her dad "You have good manners, Dad, just like Clifford the big red dog." She is full of all kinds of statements that crack us up.

Thanks again to everyone who has kept us in their prayers. Please continue to do so...Melissa is proof that prayer does work.

Love, Grandma Nancy

P.S. Kirsten, Melissa was so out of it on her last trip to IC that she missed seeing you. She does remember you though; because when we look at pictures from our times in the hospital, she always tells me your name. (Kirsten, not Shake Shake)

Wednesday, September 29, 2004 12:14 AM CDT

I hope that people are still checking in on us. I know that it has been forever since I added anything to the page. Things have been real hectic for us this summer.

First of all about Melissa--since this is her page. She was in Iowa City on Monday the 27th for her scheduled round of scans and her clinic visit. Steve finally called Jeni this morning with the results. All of her scans were clean...(Thanks, God!). Her blood counts were all good and her immune system is working (that's the reason she is getting her shots again--we have had two rounds of shots and have a regular appointment with the pediatrician in a couple of weeks for a routine visit with at least a flu shot and I think more immunizations). She is not gaining weight (only weighs 30#s) and the docs are not overly concerned but want us to keep track of it. If her weight continues to dwindle (she lost 2#s in 5 months), she will need to go back to the clinic for testing. Her next scans will be in approximately 6 months (2 years post transplant) and she will see her cancer doctors rather than the transplant ones. The best news is that she will have no more bone marrow tests unless a problem arises.

Right now she has a rotten cold that is running its course. We need to continue on our potty training campaign so that she can start to do normal things (like preschool). She is our special girl and always will be.

Back to the hectic summer...Chrissy (Doug's daughter) graduated in May and had a major heart attack on the following Wednesday. One of her arteries was 100% blocked, one was 99% blocked and the third had a tear in it. She ended up in Rochester at St. Mary's after having a total of 6 stints put in the blocked arteries in Waterloo. Then about a month later she was back in Rochester and had 2 more stints placed. She has moved to Cedar Rapids and is going to school, but has a lot of things to watch out for and a diet to follow.

On top of having two "broken" daughters Jeni and Doug were married on September 4th. The wedding was lovely! Eventually we will have pictures on here for all to see. Chrissy was a bridesmaid and Melissa was the most adorable flowergirl that ever walked down an aisle. Lots of beautiful memories to cherish!

Thank you to all of you who have continued to keep our family in your prayers! Please continue to do so...we are always aware that this ugly disease can rear it's head at any time. We do believe in the power of prayer!

Lots of love,
Melissa and Grandma Nancy

Tuesday, July 6, 2004 10:37 AM CDT

Hi, everyone!

I can hardly believe that it has been two months since I have updated Melissa's page. She seems to be doing just fine. However, as all families with sick children we find that every ache and pain is a cause for concern and worry.

Melissa was a flower girl in her soon-to-be cousin's wedding. She was adorable in her dress and did fairly well considering that she needed a nap. She got to sit on her mother's lap during the cremony and immediately fell asleep. Oh well, it was good practice for her mother's wedding which is just two short months away.

Melissa is still at Grandma's everyday. I think it would be a good idea for her to go to daycare for the child interaction. Luckily, we have two wonderful neighbors who are both teachers and are home with their children this summer. Their kids are 4 and 1 and are great playmates for Melissa. She loves her "best friends".

Jeni got word from IC that Melissa's next scans will be Sept. 27th. This is almost five months from her last set. We are praying that once again we are spared a relapse. We are also praying for our friend, Mason, who has relapsed with this horrible disease.

Please continue to keep Melissa and all of the children who are fighting their battles in your prayers.

Love, Melissa and Grandma Nancy

Monday, May 3, 2004 5:21 PM CDT

Hi!

Jeni called from Iowa City about 30 minutes ago. They had finally finished with all of the tests and are on their way home.

Melissa's blood counts were all good--Hemoglobin 13.4, White Blood count 5.5, Platelets 366. Her immunology test all came back within the normal range. Her hearing test was fine. She checked out fine with radiation therapy. Her CT and bone scan were clean. Results from the bone marrow aren't back, but we do not anticipate any problems in that area.

The study that she is in with Dr. Goldman (transplant) is for two years instead of the one that we thought, so she will have scans again in 3 months. She has a return check with radiation therapy in 6 months.

I don't mind the scans in 3 months again because after everything that she has been through it is really hard to let go of the crutch of knowing for sure that everything is fine.

For right now everything is fine and we thank God for that and we thank all of you for your continued thoughts and prayers.

Love, Grandma Nancy

Saturday, April 24, 2004 7:47 AM CDT

Hi Everyone!

CHECK IT OUT!!! We have new pictures on our website thanks to Aunt Kay Pudil!

As you can see, Melissa has changed quite a bit from a year ago when we were in the middle of stem cell transplant. She has had two haircuts and is getting her third next week. If any of you remember her before she was diagnosed, she had a full head of long blond hair.

Her next set of scans (CT, bone, and bone marrow aspiration) will be done on May 3rd. We will try to get the results posted as soon as we know anything. Please say a prayer that all goes well for her!

Nothing else is new around here. Melissa is at Grandma's today because Jeni has to work mandatory overtime this week. Wedding plans are starting to get a little hectic, as is normal summer life. Melissa's soon to be stepsister has prom tonight and is graduating on May 16th. I am glad that it is almost summer since Melissa loves to be outside.

Thanks to everyone for all the prayers--please continue to do so as we face the challenges ahead.

Love, Melissa and Grandma

Tuesday, March 16, 2004 9:32 AM CST

Hi!

Melissa wanted to change her website from teddy bears to balloons and we are having quite the traumatic time over it. With any luck I think we have accomplished the feat.

In looking back at her website I find it hard to believe that we hardly update it. I guess that is because our days pass in such an ordinary way and we should be thankful for that.

She is doing quite well. We are finding out what a headstrong little girl she is. Potty training is really a challenge--something we had planned to do when she got sick, and something that was put on a back burner through all of our other trials. Now she is being very difficult about it. I guess we'll keep trying and hope that the idea clicks in her head one of these days.

She had her first dentist appointment last week and was sent to a pediatric specialist. He is recommending that she have her four top front teeth pulled because of decay. Jeni and Doug weren't real crazy about the idea, especially with their wedding in September, but are going to go ahead and have the teeth pulled. No date has been set yet.

I sometimes think that it is good that Melissa is as young as she is. Not only does she not have a clue about what is going on, but she could really care less. As long as she is happy and taken care of then life is good. The burden of her situation and the choices for her well being are left to the adults in her life.

I really need to push Jeni to put some new pictures on here. Melissa has changed so much and is growing into quite the little girl. She loves playing with her dolls and playing "ballet". She is always asking me for a "pretty dress". Right now she needs her "horsey" from downstairs so I had better sign off.

Keep us in your thoughts and prayers! We appreciate them all!

Love, Melissa and Grandma

Tuesday, February 10, 2004 3:37 PM CST

Hi everyone,

Melissa had her scans yesterday! It has been 10 months since her stem cell transplant. We are happy to report that the results were good!

Her bone scan was clear. Her bone marrow aspiration came back clean. Her CT was clean except for an area of calcification that has been at the site of her tumor ever since the surgery was done to remove it. Her blood counts were all within the normal range and she was taken off of all of her medications.

Melissa will have scans again in 3 months. If those are clean we will go to scans once a year. As Dr. Goldman told us during our informative meeting before we decided to go ahead with stem cell transplant, every year that Melissa makes it past transplant without relapse is a plus. Most reoccurences of the disease happen within the first year. However, he was quick to tell the kids that there have been cases of children five years out from transplant who have relapsed.

I guess it just proves that there are no guarantees in life...that we need to enjoy each day that is given to us and cherish each moment that we have with those we love.

We are indeed cherishing each moment that we have with our special Melissa (while struggling to treat her as a "normal" child). I often wonder if she will always have a craving for chip dip eaten out of the carton with a spoon. With God's grace we will be able to find out.

Thank you to all who have held us in your thoughts and prayers. Please continue to do so!

Love, Grandma Nancy

Tuesday, January 6, 2004 9:00 AM CST

Hi Everyone,

Can't believe we are into 2004 already! We hope you are all doing well in this new year!

Melissa got sick--we think the flu--the Saturday after Christmas. Jeni called Iowa City several times during the weekend with various things that came up...however, all they could tell her was that Melissa is not on protocol and to treat her as a "well child". This is something new for us since the little sweetie was never sick before she was diagnosed with neuroblastoma. In the back of our minds we kept thinking "What if it is something related to her cancer?" We have weathered the worst of the storm (considering what we have been through, it seems pretty minor) and Melissa is doing much better. She goes to Clinic on Monday the 12th for a blood draw for the immunology study that she is in for Dr. Goldman.

Jeni has been working tons of overtime at her job. They have started a new billing system and are still working out the glitches. Between that and starting to plan for a wedding (Sept. 4), she is very busy.

Thanks again to all who have kept Melissa and us in their prayers over the last 17 months. Please continue to do so...we appreciate them all!

Melissa wants to type something...mmmmmmmmmmmmmdldk8lelxi9ejrjrkrikeiheueeueurfuuuukrkoo4io4ioo5o

Love, Melissa and Grandma

Wednesday, December 24, 2003 10:30 AM CST

Hi everyone!

I can't believe that it has been over a month since our last entry on Melissa's page. I guess we have just been enjoying a child with cancer who is in remission! We are trying to take each good day that God gives us and enjoy it to the fullest!

Melissa is doing great and is fairly anxious for Christmas to get here so that she can open her presents! This is the first year that she is grasping the meaning of the holiday and is just as anxious for Grandma to turn on the lights on the "naTV" (nativity) as she is to have the lights on the tree plugged in. She is constantly making us smile and bringing joy to our lives...

To all of the people who have been there with us through these difficult times, be it caregivers, doctors, family, friends or the endless number of people who have and still do remember to keep Melissa in their prayers...may you find joy in your lives!

Merry Christmas and a Happy and Blessed New Year!

Melissa, Jeni, Doug, Chrissy, Grandma Nancy and Papa Bob

Thursday, November 13, 2003 11:05 AM CST

Hello, everyone! I know it has been a long time since our last update. That means two things--our lives ar pretty "normal" and we have been very busy living them.

Melissa is 6 months post transplant. She was in for a clinic visit in October and to have blood drawn for the study that Dr. Goldman has her in for immunology. The test showed that her T cells are not where they should be yet so her immune system is not functioning fully. They believe that it will come around and in the meantime she has to continue taking her daily antibiotic.

Last Monday, the 10th, she was back in Iowa City for her 6 month scans. Because of a hospital scheduling problem she was not able to get her bone scan done (it has been rescheduled for Dec.1st), however she was able to have her CT and bone marrow aspiration. Her CT looked "good" and her bone marrow was "clean". Now we will see how her bone scan looks...we were told that neuroblastoma has a tendency to return in the bones first.

Other than these trips to IC we are pretty much living a "normal" life. Melissa is a very funny girl and will celebrate her third birthday on the 24th of this month. She is always amazing us with her "adult" attitude. Some of her favorite sayings right now are--"Relax!", "It happens!" and "Whatever!" She is still in love with Barney, but has developed an interest in Caillou, the Wiggles and anything else that catches her fancy...oh, yes and all things McDonalds!

Thank you to all who have continued to keep us in their prayers since Sept. 2002! You cannot imagine how grateful we are for all of them and for God's blessing in this child!

Happy Thanksgiving to all!!!

Love, Melissa & Grandma

Monday, September 22, 2003 3:15 PM CDT

Well sorry it's been so long since you've heard from me.

The good news is that Melissa is CANCER FREE still and also has her Hickman(C-Line) out and has been doing great with it. In November she will have her next set of scans to see if she is still cancer free--which of course she will be!!! Right docs!!!!!

Well this weekend we celebrated our one year diagnosis on Saturday--hard to believe that one year ago we were in Iowa City for just over a month. Tomorrow is our one year anniversary for going to the PICU for 3 long and aggravating weeks. Boy am I glad those days are long behind us and all has gone up from there.

Friday we will be back in Iowa City for a check up--our first lab draws since getting our hickman out--this should be an adventure.

Melissa still shows everyone where her line was in her chest and where it is now---"in my bucket". What a character.

In closing, Thank you to everyone who has visited our site, left us messages, and sent prayers upon prayers to the Lord to pull us through this hard time it has all been appreciated.

Take Care--

Jeni and Cancer free Melissa(Miesa)

Sunday, September 14, 2003 6:01 PM CDT

Just wanted to let you know that Melissa was in Iowa City on September 9th for a GFR (kidney function) test and for an audiology test. She was pretty crabby for her audiology test as it was her nap time, so her report was that "the patient was uncooperative"...if they only knew how independent she is! On the 10th she had her Hickman removed in outpatient surgery. It all went very well, except that Melissa has had her lines for almost a year and when she realized that they were gone she told her mom that she wanted them "BACK!"

She seems to be doing very well right now except that she has a small cold from the weather change. We continue to pray that she keeps on the right track and we ask you to do so also.

Love, Grandma and Melissa

Monday, August 25, 2003 4:51 PM CDT

Great news today!!!!

Melissa had her scans today--CT and bone marrow--and the results are in. Both scans came back clean! They did not do a bone marrow aspiration because she was already awake when she came back to the clinic. They are not too concerned about not getting a bone marrow check because all of the aspirations that they have done since day one have come back clean. Her next scans are in November.

The results of her CBC blood test were also excellent! Her white blood count is 8.6, hemoglobin is 9.9, and her platelets are 245.

The biggest news of all is that she is scheduled to have her Hickman line removed on Sept. 10th. This could prove very interesting as she is very protective of "her line".
We all hope it is a good thing.

It hardly seems possible that it has been almost a year since she was diagnosed. Please continue to pray for her as obviously there is power in prayer!

Thanks and love, Grandma

Friday, August 22, 2003 3:54 PM CDT

The word this morning was that her ionized calcium was normal yesterday but her serum calcium is just above normal. We are on decreased fluid and oral lasix today and will go home with overnight fluid and oral lasix for about five days. We will be discharged early Saturday morning and both Melissa and I are ready to go!!!!

Melissa and I went to morning activity where Melissa made a picture and played. After lunch she took a long nap and when she woke up from her nap she got to be unhooked from her IV fluids. Of course she wanted to go outside for a walk and since I haven't been outside since Monday, I was more than ready to go. We started out at the playground but ended up somewhere on campus and had a long trek back. Needless to say, Grandma is pooped. We have ordered her supper tray and I have promised another walk when she is done eating. Hopefully, I will be recovered by then. She needs to be hooked back up by 7pm.

We went to the PICU on our walk but her favorite nurse, Bob, was not there. It brings back all kinds of memories going back to the Pediatric Intensive Care Unit. We have come so far, but have so far to go.

Please keep praying for Melissa's health.

Love, Melissa and Grandma

Thursday, August 21, 2003 4:47 PM CDT

Yeah!!! Melissa's afternoon calcium count is normal!!!

The next steps will be to ween her off of the fluid and lasix and see if her levels remain normal. The word this morning was that we would be going home either late Friday or early Saturday.

We have had a busy day at the hospital today--lots of walks and playing. Kathy took her to the playroom and they made pictures and played with toys. She is getting well enough that it is getting tough to keep her entertained in the hospital setting.

Keep us in your thoughts and prayers!

Love, Melissa and Grandma

Wednesday, August 20, 2003 5:37 PM CDT

The "powers that be" (UofI doctors, national head of the cancer protocal, and yes I suppose even God) have decided that the best approach to Melissa's situation is to take her completely off of Accutane. No one is saying exactly what this will do for her final prognosis and I imagine that is because nothing is ever set in stone. All we can do is continue praying, and I can't even begin to thank all of you for all the prayers being offered for her.

xxfgjuyhyjkkjhbgbghnmjkm---that was thank you from Melissa. She wants to help Grandma type.

She had a pretty busy day today. It included several walks, going to story hour in the library with Mariah, making a necklace and playing in the playroom with Kathy, and having music therapy with Kirsten--we found out that Melissa really likes rocking to Tony Bennett. Hopefully, this will let her have a good nights sleep.

Her calcium levels are dropping nicely and it looks like we will be going home in a day or two. As much as I love all the people here, Dorothy had it right when she said "There is no place like home!"

Love to all from Melissa and Grandma

ftyujjngffdhnikokljhdfs--goodbye from Melissa!

Tuesday, August 19, 2003 4:46 PM CDT

Hi, everyone!!!

Well here we are again. Melissa and Grandma are back in Iowa City for several days. Melissa's calcium count went up again with her doses of Accutane. Jeni did the usual blood counts at Allen Hospital on Monday and called me at home to pack my suitcase because we had to bring Melissa down to the clinic because her calcium level was 15.6 (normal is 10.something). We weren't sure that she would be admitted, but her calcium count had gone up to 17.2 so we ended up staying. They are giving her IV fluids through both of her lines and then lasix to flush it through her kidneys. Her last calcium count at 2pm was 12.9, so it is dropping but it still looks like Friday might be the earliest we are out of here.

We did get some things done today that saved an extra trip down here. Melissa got a shot to boost her red blood cell count this morning. This afternoon she had a follow up visit with the radiologists.

This morning we went to music group in the big playroom...it's kind of fun seeing Melissa reacting to a group setting...it is real easy to imagine her in school in the same situation. Let's all keep praying that she stays cancer free and can have the "school experience". Her doctor did say today that this disease takes a long time to be cured. I hope that we are up to the task!

Keep us in your prayers...we appreciate them all!

Love, Melissa and Grandma

Thursday, August 7, 2003 8:47 PM CDT

I can't believe it's been almost a month since the last journal update. Melissa is doing quite well. The doctors think they have a solution to the calcium increase she gets when she takes her Accutane. She will receive IV fluids and lasix during the two weeks that she is on the medication. Then she is off the medication for two weeks. This is a good thing because it allows her system to get back to normal. The Accutane (which is a medication given to patients with acne problems) really dries her skin out and she develops rashes. We need to keep her "lubbed up" during this time.

She goes back to Iowa City to the clinic and to see the renal doctors on Monday, August 11th. She is scheduled to have a follow up visit with the radiologists on the 19th. Then on the 25th she is scheduled for scans. The scans will be done every three months for the next year. We continue to pray that the scans come back clean and that she remains cancer free...we hope that you will join us in these prayers.

On a happy note, Doug and Jeni have pretty much completed the work they were doing on their house. They slept there for the first time in quite a while last night. I know that Dee and Don will miss having them there all the time!

Either Jeni or I will try to keep the site updated more frequently. I find myself just enjoying the good times with Melissa and forget to share them with you all.

Keep us in your prayers...we appreciate them all.

Love, Melissa and Grandma

Friday, July 11, 2003 10:28 AM CDT

Just an update on Melissa.

Melissa had a clinic visit yesterday--92 days post transplant. Her counts---blood and electrolyte--were are fairly good. It was decided that she would go back on the retinolic acid at half the dose she was getting before. Jeni is to continue to give her IV fluids at night through the weekend. She will have another test of her electrolytes on Monday and we will see if she needs to continue on the overnight fluids or if she is getting enough on her own. Her appetite is coming back since we are a week plus past radiation...yes she is even eating something besides chip dip...although that is still her favorite.

Melissa will go back for another clinic visit on July 28. In six weeks she will go in for scans (CT, bone and marrow). She will have scans every three months for a year. The cancer is most likely to reoccur in the first year but can come back anytime. If it doesn't come back in the first year, then every year after that with a clean scan is better and better.

For all of you out there who are praying for Melissa please continue to do so. She is such a special little girl as any who know her can tell you.

Love, Melissa and Grandma

Friday, July 4, 2003 9:33 AM CDT

Happy 4th of July everyone!!

Thought I should update Melissa's page so you all know what is going on.

Melissa had her last radiation treatment on Wednesday! She came through it all like a little trooper--just like she has handled all of the trials and tribulations that she has been through. Her calcium level and potassium counts were good enough that after her radiation she and Grandma got to come home. She is getting IV fluids overnight (10 hours) and still gets lasix twice a day. She will go back to the clinic for a visit next Thursday. I am sure we will find out then what the decision is on her taking the retinolic acid (the suspected cause of her calcium level increase). Indications are that we will take a lower dosage and continue to monitor her calcium closely. If it goes to a high level we will be admitted for another stay to lower it---I'm beginning to view U of I Hospitals as my personal Club Med. Jeni took Melissa in to Allen yesterday to have blood work done and the results of her calcium, potassium and CO2 were all very good.

She seems to be feeling good. She did take two naps for me yesterday (probably because of the radiation), and her appetite is slowly returning. She is happy and inquisitive--everything a 31 month old child should be.

Please continue to remember us in your prayers as we go through the next months and years. We will keep you updated on her progress.

Love, Grandma

Monday, June 30, 2003 10:59 AM CDT

Day 10 of 12 for radiation is now completed!!!!

Some bad news was given today---Grandma and Melissa cannot go home until Wednesday after radiation. Melissa's Calcium went to normal Sunday night but because she was NPO(nothing by mouth) for radiation her Calcium count went up again. The doctors have decided that the only was to handle the levels is to keep her in the hospital until after radiation is completed. As for her potassium level she came in with very low counts and had to take oral doses of potassium and now today her count is 5.0 which is at the high end of normal. The good news is that her bone marrow is doing what it is supposed to do because her blood counts are all normal. They haven't decided what to do about her retinolic acid medicine after we get out of here--the best part about the retinolic acid medicine is that it only comes in a pill they can't make it suspension form so we(Doug and I) have since taught our 2 1/2 year old how to swallow pills with no problems.

Keep praying they are all working and being heard!!!

Love--
Jeni and Melissa

Saturday, June 28, 2003 7:48 AM CDT

Well, here we are in the hospital in Iowa City again.

Thursday Jeni and I brought Melissa down for her 8am radiation appointment. Each time she has radiation she is anestithized and then we go to the pediatric clinic for recovery. While in the clinic on Thursday the staff was addressing several of Melissa's "issues" (high blood pressure, not wanting to eat or take in many fluids, nausea, etc.)when it was discovered through an electrolyte test that she had a high calcium level. This was a problem that needed immediate attention and it was decided that she needed to be hospitilized. Of course, once again we were not prepared to stay but we figured out that Jeni could go to my house and pack my stuff and Bob could bring it down to me that afternoon.

Jeni and Doug came down Friday to go with Melissa to radiation and to meet with the endocronologist that is seeing her and to go with her when she had a kidney ultrasound. Since we have been hospitalized Melissa has had an EKG (results were good), a chest xray(results were good),and the kidney ultrasound (results were normal). She has had various blood tests to see why her calcium is high and to keep track of her other electrolytes. Not all of the results are back, but the main thinking is that the medicine (retinolic acid) that she needs to take for six months is the cause of the calcium build up. There have been other cases where this has happened. Today after two days of pushing fluids and giving her lasix so that she gets rid of the fluids, her calcium levels are almost back to normal. She does need to get blood today because her hemoglobin is low (probably from the radiation) but other than that you wouldn't know that there is anything wrong with her.

The problem now for the doctors to figure out is what they will do about the retinolic acid situation. It would be best if she could take this med since studies have been published that show a 10-20% better chance of not having a cancer reoccurence when this med is taken. The doctors have e-mailed the head of the cancer protocol for nueroblastoma to get an opinion on what route to take. We will be here until Monday when her radiation is over unless something else happens. We will be done with radiation on Wednesday.

Please keep us in your prayers. We have a lot of issues that need to be resolved.

Love, Melissa and Grandma

Monday, June 23, 2003 5:11 PM CDT

Just a quick update!

Jeni just called and Melissa has been released from the hospital. Her fluids have been pumped back up and she is feeling better. Jeni now has the right anti-nausea medication to push through Melissa's line. She has enough to take her through a week after radiation is over and has been told that she can get more after that if needed.

The kids will stay in IC tonight so that they can have Melissa back for her next round of radiation at 8am tomorrow.

Thanks for your prayers!

Love, Grandma

Sunday, June 22, 2003 9:49 PM CDT

Melissa is back in Iowa City, hopefully for only a short time.

She has had four treatments of radiation and is very nauseous from it. The area of radiation is right over her stomach and this is the main reason she is having this side effect. When she has radiation during the week, she is given a dose of anti-nausea medication through her line like an IV. When we give it to her here at home, she gets by mouth and it has to go through her stomach and into her system. This doesn't work too well when you are throwing up. She started throwing up Saturday evening and continued through Sunday afternoon. I was worried about her getting dehydrated and the dehydration adversely affecting her kidney situation since she was not taking in that much for fluids but was losing alot through nasuea. Jeni called IC and they had Melissa come down to be admitted. Of course, the little stinker did not throw up once after Jeni and Doug picked her up from our house. Tests did show that she was dehydrated however, and she is getting IV fluids and getting some of her electroytes straightened out. Jeni is hoping that something can be worked out so that she can give Melissa the anti-nausea med through her line over the weekend. We only have 8 more sessions of radiation to get through...

Melissa's blood counts were good today--
White blood count -- 11.3 (after 2 shots of GCSF)
Hemoglobin -- 10.7
Platelets -- 143
Potassium -- 4.4

Her CO2 count was low and a test called C Reactive Protien was way high. The C Reactive Protein being high should mean that she has an infection but she has no fever or any other signs of infection. I'm sure J&D will find out more tomorrow as more doctors see Melissa.

One good thing about this is that Jeni doesn't have to get up super early to have Melissa in IC by 8am for her radiation treatment. Hopefully things will go good and they will not have to be there long...otherwise, Grandma will be called into duty and get another Iowa City vacation.

Keep Melissa in your prayers!

Love, Grandma

Sunday, June 15, 2003 10:49 AM CDT

Jeni seems to be too busy to update Melissa's page (and I can verify that she is) so Grandma will give you some news.

Jeni took Melissa to Iowa City on Tuesday, June 10th for a CT, bone scan, and bone marrow aspiration. She had all of these tests done at the same time because she needed to be put under anesthesia for them. The results of the test were all clean!!! On Thursday, June 12th, Melissa was back in Iowa City for another abdominal CT to determine the exact site for radiation therapy. She will start her radiation on Tuesday the 17th and will continue daily for 12 days (excluding weekends) and will finish on the 2nd of July. She will continue on her medications after radiation is over and barring any unforseen problems we should be able to regain some type of normalcy to our lives. We are still dealing with a kidney problem and that remains to be resolved.

Please continue to remember Melissa in your prayers!

Love, Grandma

Friday, June 6, 2003 9:29 PM CDT

Just a quick entry to update you on Melissa's last blood test results--

Platelets--133 (up)
White Blood Cells-- 5.1 (up)
Hemoglobin--11.6 (up)
ANC (good WBC)--3060
Potassium--4.9

These are great counts! It looks to us like her stem cell transplant is finally starting to kick in and work like normal. Her potassium is still borderline high, so we will continue to work on that; but on the whole we are very pleased with these counts.

Thanks to all of you who have checked Melissa's site and have left us encouraging messages. Also thanks to all of the family and friends and extended family and friends who have continued to remember us in their thoughts and prayers. Words cannot express our appreciation!

Keep praying!

Love, Grandma

Tuesday, June 3, 2003 6:57 PM CDT

Day 54 after transplant!

Melissa was released from the hospital on Sunday and the kids pulled their camper home yesterday. We are all glad to be back home, but find that catching up with things makes us busier than ever.

Melissa and Grandma are having a girls night together. Jeni and Doug are working on their house and Grandpa is playing softball (or as Melissa says--"Baseball! Catch it!) She seems to be doing pretty good at home. She still hasn't gotten her appetite back but did have a few Fruit Loops, some popcorn, and chips and dip today (YUM). We made a trip to New Hampton to visit Greatgrandpa, Uncle Dennis, and Aunt Sharon and to get some of the asparagus crop. Melissa did very well on the trip and was extremely helpful when Grandma froze some of the asparagus this afternoon.

Jeni did Melissa's blood draw at Allen this morning. Melissa's counts were--

Platelets--89 (up)
White Blood Cells--4.4 (up)
Hemoglobin--10.7 (up)
Neutrophils--64ood cells of her total count
Potassium--5.0 (high)

We are working on the potassium problem. We are doctoring her milk to lower the potassium and we are also putting her Sodium Citrate and Citric Acid solution in her bottles. It's a good thing she can't read because if she knew that this is what we were doing she would be very unhappy with us. Hopefully her little body will get things straightened out and her kidneys will recover more from the chemo...we just need to be patient.

Melissa has spots on her face--we assume from wearing the mask. We do have some ointment to put on it and she does not wear the mask while we are at home. Hopefully we can get this cleared up. She has little peach fuzz hair on her head--just give us a few months!

Keep Melissa in your prayers--we appreciate them all!

Love, Melissa & Grandma

Saturday, May 31, 2003 8:20 PM CDT

Let's try this again---my curser disappeared before so when I started to type it took me out of the page. Aren't computers wonderful!!!!

Day 51 after Transplant!!!

Well as everyone states the A-team is back in swing to let the B-team go home and get some rest. Let me tell you when we pulled in to the parking ramp I told Doug "I don't want to go in". It just gets old after awhile. From what we were told Melissa should be out of here either Sunday late or Monday early. Which works out great since mommy has to go to work on Tuesday, Wednesday, and Thursday since those are the only training days on the new system at work.

Melissa got to be unhooked alot of today and of course wanted to go "that way". After we got here and walked grandma and grandpa out to the parking ramp we didn't get back to her room until 7:00 p.m. then when we got here she was hungry and wanted popcorn so Melissa and Dad when to the Nutrition room to cook some. She only had about 5 kernels and she was done. One thing we noticed is that her appetite isn't up to par yet but the docs also haven't written for her to get her Megace(appetite enhancer) again. Once they start that again hopefully she will be back to her old self again.

The nurses said that after transplant every kid comes back atleast once for something. A minor infection and fever coming back for I can handle. Thank God for my mom and dad or Doug and I would be crazy by now.

Melissa's counts today--

Hemoglobin--10.5
White blood cells--5.1
Platelets--69
Potassium--4.7(still normal)

Pray for us to go home soon.

Love and prayers to you and yours--
Jeni, Doug and Melissa

Friday, May 30, 2003 5:34 PM CDT

Day 50 after transplant!

We had a pretty quiet day today. Melissa is feeling much better. She was "unplugged" for 6 hours today and we made sure we got our miles in. She was allowed to go back on a general diet and to finally have milk. She is gradually working her way into eating again and that is good. Her supper is here and she of course is sleeping...we will either "nuke" it of go for the standby--mac and cheese.

Melissa's counts today--

Platelets--64 (up)
White blood cells--8.1 (up)
Hemoglobin--7.7 (transfusion this morning)

The doctors are giving her a shot tonight to her stimulate her red blood cell production. She had one a couple of weeks ago, but they feel it might have been too soon for it to help; so now we will try again.

Sleeping Beauty is waking up so I will cut this short.
Jeni and Doug will be back tomorrow and hopefully Melissa will be released Monday. I have to admit that I have enjoyed my time with Melissa--even the bad times. She and I have had the chance to have many interesting conversations and believe me they have been something!
She is a constant joy!

Thanks for the words of encouragement left on the guestpage and for the prayers for her. We want nothing less than for her to be the "miracle child" and it seems that this will be the work of a Higher source.

Love, Melissa and Grandma

Thursday, May 29, 2003 6:06 PM CDT

Day 49 after transplant!

Once again Melissa is asleep and I think I will get her journal page done.

We had a very busy day today. Melissa slept pretty good through the night but woke up in a very grumpy mood. Have you ever tried to help a nurse give a 2 year old a bath while she is fighting tooth and nail and saying "No! No! No!" It's not fun.

Today was Melissa's bone scan. The med that she got to sedate her made her sick and she threw up some of it. She then got benadryl to help calm her and of course that did not work. I ended up laying on the scanning table with Melissa to try and get her to sleep. She was pretty calm while they did a lateral scan because she could lay on her side and hold my hand. It was entirely different when they wanted her to lay on her back. She didn't want to lay flat--she had to put her foot up on her opposite knee (a position she used quite often in the PICU). She also wanted to discuss Grandpa's van and push on the scanning screen. Needless to say, they have decided to redo the scan when she is put completely under for her CT and bone marrow aspiration. We are still waiting for these tests to be scheduled.

We got the results of her GFR test that was done yesterday. Her kidney function is 1/2 of what it was before the transplant. Some of this should correct itself within the next few months. I will update you when future tests are done.

The good news today was that the NG tube got to come out and Melissa can eat and drink. We also went to the playground this afternoon and took a stroller ride to see the big water fountain in front of the hospital. It was really fun to watch Melissa at the playground. She finally talked Grandma into letting her go down the slide which she thought was "Hot". There were a lot of kids at the playground and seeing her trying to interact with the kids was adorable. She hasn't been around that many kids since daycare ended in September. Of course, she couldn't have a lot of interaction with them yet because of her restrictions but she did wave to everyone when we left. She hasn't eaten a lot yet, but she is interested. We went up to the eighth floor for a drink and she wanted "cake", so she did have a couple of sips of pop and a bite of a muffin.

Melissa's counts today--

Platelets--59 (up)
White blood cells--5.7 (up because of shot)
Hemoglobin--8.1 (down)

She will be on the antibiotic through Sunday. I was amazed at how much better she felt after the NG tube came out. She and another little girl are the only patients in the transplant unit, so this afternoon she got to go out of her room and play in the hall without her mask. She was very happy and playful.

Keep praying for her--the prayers are working!

Love, Melissa and Grandma

Wednesday, May 28, 2003 5:55 PM CDT

Day 48 after transplant!

Melissa is sleeping in one of the lounge chairs in the room so I thought this would be a good time to do her update.

Our day started at 2am when Melissa decided that she was awake and Grandma should be too. She was content to lay in her bed and watch Barney but Grandma had to sit it a chair by the bed and hold her hand through the rails. Finally at 5am Becky (her nurse) gave her a med that helped put her to sleep. Thank you, Becky!

The docs came in this morning and heard bowel sounds so Melissa got to have her NG tube clamped of and we were free from the suction all day. She did pretty good all day. She was only sick soon after they clamped it off because she was upset with Grandma about something. Then she was sick again late this afternoon--once again had been crying about not wanting to do what she had to do.

She kept asking for her "ba", her supper, chips and dip...so that is part of the reason we are trying to ween off the suction. She has only had a couple of swallows of juice so far today. I am hoping this improves in the next couple of days.

She had her GFR test this morning and her audiology test this afternoon. She has some hearing loss of high pitch sounds in her left ear. I haven't heard anything about the kidney test--I'll have to ask tomorrow. She will only have a bone scan tomorrow. They are not doing the other two tests because for the CT she needs to be given contrast which is hard on her kidneys. She is dealing with some kidney problems from all the chemo she got and the antibiotic that she is taking is also hard on the kidneys so they are going to wait on the other tests for a week or so to give her kidneys some rest time. The kidney problems will hopefully correct themselves but could take a few months to do so.

After her test, since we were "unplugged" we went for a walk and even went out to the playground. Melissa really loves being outside and of course did not want to come back in until Grandma bribed her by letting her play with a tub of water and two cups. Kirsten also came by this morning with music and fun.

Melissa's counts today--

Platelets--57
White blood cells--1.7 (GCSF shot tonight)
Hemoglobin--8.3
Potassium--4.2 (good)

It will be wonderful when all of her functions come together and work properly. It's amazing all the things that go on in our bodies that we take for granted.

Keep us in your thoughts and prayers! We will get through this!

Love,

Melissa and Grandma

Tuesday, May 27, 2003 5:47 PM CDT

Day 47 after transplant!

Well here we are in the hospital again...Melissa and Grandma!

Melissa is doing much better today. The antibiotic that she is getting seems to be working although she is only getting it every 18 hours because her body is retaining it. Also, remember the potassium problems that we have been fighting ever since she got home? Now her potassium level is so low that she will be getting a bolus as soon as it comes up from the pharmacy.

Her counts today were--

Platelets--49
White blood count--1.9
Hemoglobin--8.8

All of these are dropping because her body is trying to fight the infection. As the antibiotic works we hope these come back up on their own.

She will be able to go ahead with the tests that she was scheduled for this week. Tommorow we do the GFR (kidney) test and the audiology test. Thursday she will be put under for the CT, bone scan and bone marrow aspiration. I hope all of these go well and the results are what we would want.

I will keep you posted since as you can see Kathy (Child Life) was true to her word on the guestbook and brought us a laptop. We also had a visit from Kirsten (Music Therapy).

One good sign is that Melissa keeps asking for food and her bottle with "milt"...the bad thing is that she is NPO (nothing by mouth). Hopefully that will change as she gets better.

Keep her in your prayers...we appreciate all of your thoughts and prayers.

Love,

Melissa and Grandma

Sunday, May 25, 2003 8:52 PM CDT

Melissa is sick. She spiked a temp of 39.7 last night and threw up twice in the night. Today the docs ran alot of precautionary tests because of all that she has been through and because they didn't want to take any chances.
They did an xray of her abdomen that didn't show anything and sent her for a CT of the same. It came back that her tummy and liver were fine. The pancreatic enzyme test came back fine.

The one thing that did not come back fine was the culture that they took from her lines. One of her lines has a bacterial growth in it. This is something that we dealt with back in January when Jeni and I ended up staying at the hospital for a week.

All of her counts are dropping because her body is trying to fight the infection. She did get a transfusion of blood last night and that helped some. She was started on the antibiotic for her infection today and it has yet to kick in. She is still running a high temp and is still throwing up. Last time when the antibiotic kicked in she made a 360 degree turn around and we are hoping that is the case this time.

It sounds like Grandma will be deployed to the scene tomorrow and will be there most of the week. Please remember us in your prayers....

Love, Grandma for J, D, & Melissa

P.S. We do not have a laptop in our room anymore so I will have to update you when I get home.

Saturday, May 24, 2003 9:12 PM CDT

Day 44 after transplant!


We had a minor setback today. Melissa spiked a temp during the day today and Jeni and Doug took her to Iowa City as required. When they got to IC her temp was down to a 37.9 (38.0 is considered a temp) but they ran cultures on her Hickman lines (a common source of infection and resulting temp), did a type and cross on her blood, and did a CBC. Her results came back as--

Platelets--105 (5 more than Thursday)
White blood cells-- 4.3 (1.2 more than Thursday)
Hemoglobin--8.4 (.4 more than Thursday and not low enough for a transfusion)
Absolute Neutrophil Count--2838 (1536 up from Thursday)
Potassium--5.2

I think her problem is her potassium level. High potassium makes her hurt and act sick. Perhaps they can come up with a solution while she is in the hospital.

Right now it looks like Jeni, Doug and Melissa will be in Iowa City through Tuesday. The doctor on call this weekend thought that since Melissa is "in patient" they could reschedule the tests that she was to have on Wednesday and Thursday to get them done while she is there.
I'm sure I will have more info as time goes on.

Please say a prayer for Melissa's potassium problem.

Love, Grandma

Thursday, May 22, 2003 2:38 PM CDT

Day 42 after transplant!

Time flies when you're having fun! I can't believe we are 42 days out of transplant...how fast it's gone and how long it's been!

Jeni just called me with Melissa's counts from today's blood test.

Potassium--4.8 (normal 3.5 - 5.0)
CO2 (oxygen in blood)--20 (normal 18 - 27)
Platelets--100--yeah! these are up so we are making our own--(normal 150 - 400)
White Blood Cells--3.1--yeah! also up from last time--(normal 4.0 - 12.0)
Hemoglobin--8.0 (normal 10.9 - 15.0)--will probably get transfused on Wednesday when in Iowa City
Absolute Nuetrophil Count--1302 (# of good white cells out of her count of 3100)

Melissa is scheduled to have blood drawn on Tuesday at Allen in Waterloo. Then on Wednesday we go to Iowa City for GFR (kidney function test), Audiology test, and blood transfusion (because of her low hemoglobin). Thursday she goes back to Iowa City for a bone scan, bone marrow aspiration, and a CT scan. She will be put out for these tests. They used to just sedate her, but she has had so much done to her that sedation doesn't work anymore.

Please say your prayers that all of these tests come back good. Punkie (as Melissa now refers to herself) needs all of the love and prayers that you can send her way.

Thanks and love,

Grandma for Melissa, Jeni, and Doug

Tuesday, May 20, 2003 9:57 PM CDT

Day 40 after transplant!

Sorry for the lapse in journal entries! An electrical storm took out the modem in my computer and I haven't had access to the internet until now.

Melissa is doing pretty good. She has been home since the 13th. She has pretty much spent most of her time with Bob and I while Jeni and Doug continue to work on their house. As any of you who have ever done remodeling know, this can be a very involved process; but the kids are doing a good job.

Melissa's counts are hanging in there. Her last blood test showed that she had made platelets on her own but that her white blood count and hemoglobin had dropped. She got a shot in her arm (something she did not like and discusses still) to stimulate her red blood cell production. She has a potassium problem...too much...and we are taking medication and watching our diet to help cure this situation.

Since coming home she has started eating and drinking more and was taken off of her IV nutrition...something that makes life easier for Mom and Grandma.

She continues her regular visits to the clinic in IC. Next week she is scheduled for a kidney function test, a CT scan and a bone marrow aspiration. When her counts start to be more consistent she will be scheduled for her two weeks of radiation.

She has been a real joy to have home. She loves to be outside and has no problem putting on her hat and her mask (if we forget, she reminds us). Like a normal two year old she is learning new things every day and is quite the mimic. She has started to refer to herself by name...Messa or Punky. All pictures of little girls are Messa. She is still a Barney addict and has all of the dance moves memorized. We love her to pieces.

That's about all for now. I will try to update more regularly now that my modem is fixed.

Keep Melissa in your prayers for recovery and remission.

Love,

Grandma for Melissa, Jeni and Doug

Monday, May 12, 2003 5:52 PM CDT

Day 32 after transplant!

This news of Melissa is coming to you from Grandma at home. The info is from Jeni's phone conversations with me.

Melissa was discharged on Saturday and Option Care (a home health care company out of Cedar Rapids that has provided things to Jeni & Melissa in the past) came out to the campground and got Melissa set up with an IV pump to be used at night for her CVN (nutrition) feedings. Melissa is getting back in the swing of eating her favorites---cheese and french fries---and drinking from a cup (of course she wants her milk in a "ba"). We figure we can break her from the bottle later as long as she is drinking now.

She made a trip back to Waterloo and Denver on Mother's Day to wish Grandma Dee a Happy Mother's Day. (This Grandma was at the farm.) She seems to be adjusting to life outside of a hospital room.

Today at 1pm she had her first visit to the clinic as an outpatient. Her counts were--

Platelets--35
White blood cells--3.0
Hemoglobin--10.0
Hematocrit--30%

She got a platelet transfusion and her Monday dose of IVIG (the immunoglobin med). Today Jeni and Doug found out that sometime within the next 2 weeks Melissa will start receiving radiation treatments to the tumor site. The radiation will be given everyday for 2 weeks and the treatments will last only about 15 minutes a day.

Jeni and Doug got the "okay" to take Melissa home for good. However, they have paid for their campsite through June 2nd. They don't plan on coming home "for good" until the radiation treatments are done.

Melissa's next visit to the clinic is Thursday at 1pm and this is just for a checkup and probably blood work. I am waiting to hear from Jeni what she and Doug have planned until then. I will either be going to the campground or Melissa will be coming here since her radiation has not started. If she comes here, Jeni and Doug can get more hours in working on their house.

Thanks for all the prayers! Please keep them coming!

Love,
Grandma for Melissa, Jeni & Doug

Friday, May 9, 2003 7:57 PM CDT

Day 29 after Transplant!!!!!

Well today will be the last entry I will be making for awhile. We are going home(the camper by North Liberty)tomorrow so any updates will be by mom from her house or by me when we finally go "really" home when I get hooked up to the internet.

Today was good until Dr Goldman wanted to add a new medicine which is Prevacid to hopefully help fix her tummy. Of course, she got sick when she got it. Who would have ever thought????? Otherwise no sickness all day.

We went outside many times today and since it was so nice, Melissa didn't want to come in.

She got to help pack up her room and she helped haul it out to the car (after we found it). She hasn't seen mom's car for so long she thought we lost it.

Melissa's counts--

Platelets--60 this morning and 42 this afternoon
White blood cells--3.3
Hemoglobin--10.6
Hematocrit--31%
ANC--1320

Thanks for all the prayers they have worked, but still keep praying because everyday is a new day and we have a long road to go.

Thanks again!!!!!!
Love--
Jeni, Doug and Melissa

Thursday, May 8, 2003 4:14 PM CDT

Day 28 after Transplant!!!!!

Today has been rather enjoyable. The docs this morning said that her NG tube could be pulled since they think the feeds are making her sick so they quit them. The only thing she has going on now is the CVN over 12 hours at night and all her meds she has to take by mouth. Also the big news is the docs want to release her to the camper on Saturday and bring her back to the clinic on Monday for a platelet transfusion and then every other day from then on for possibly the next several months. Doesn't that sound like fun????? Although since the tube has been pulled out she has been drinking pop and had 1 chip with dip today and part of a piece of licorice and then got sick. So who knows what to do now. We'll have to wait and see what tomorrow brings. Our nurse today (Michelle) did get the docs to write of Zofran (anti-naseau) medicine to be given orally. So since the last episode she did get the Zofran and so far so good. I think her tummy isn't ready for all the food excitement yet. But I'm just the mom. I really don't want to take her anywhere yet until she doesn't get sick for one day.

Melissa's counts--

Platelets--99 this morning and 76 this afternoon
White blood cells--3.8
Hemoglobin--11.1
Hematocrit--32%
ANC--1520

We had a big surprise today--Grandma Dee and Aunt Debbie came to surprise us and visit. We had a nice time and Melissa slept part of the time, but then she was up and ready to play. Kathy from Child Life came and took Melissa to the play room--they made 3 med cup flowers, a puppet with feathers, and a chart to put stickers on when Melissa takes a drink. Kirsten from Music Therapy came and played music for Melissa, Mommy and Daddy--can you believe that we all participated.

I should have more exciting or different news tomorrow. Keep Praying!!

Love--
Jeni, Doug, and Melissa

Wednesday, May 7, 2003 6:42 PM CDT

Day 27 after Transplant!!!!!

The A-Team--Mom and Dad are back!!!!

What a wonderful day it's been. This morning I called Melissa's room from home before we left and spoke to Dr. Rajeev. He said their game plan was to up the rate of her feedings and hopefully she can go to the camper by the end of this week or next week--and "only" come back to the clinic EVERYDAY for a platelet transfusion. That doesn't sound like being discharged and going to the camper when we'd be here everyday, why not just stay. Her feeds were increased to 35cc every hour and at noon to be unhooked from all feeds and IV fluids until 2:30, at 2:30 she got hooked up to her feeds and within 10 minutes threw-up, so off came the feeding tube and she hasn't been hooked up to anything since then but has still thrown-up twice. Her nurse tonight (Alyson) is going to start her feeds after we leave and plans on starting them slow 10cc every hour which is only 2tsp. if she can keep them down then after 4 hours she will increase them up to 15cc and see how she does.

Her potassium has been low all week and she has needed bolus' up until today when her potassium was high and had to be checked every 4-6 hours finally at the 6 o'clock test her potassium was 4.7 which was within the normal range. So tonight she will get her CVN--if it was still high she wouldn't have gotten the CVN.

Melissa's counts--

Platelets--69 this morning and 49 this afternoon(yep transfusion)
White blood cells--5.1
Hemoglobin--8.9 (yep transfusion)
Hematocrit--25%
ANC--3417
no mention of a shot yet

Everyday gets a little better but we're use to baby steps whatever it takes--my punkie is too special to rush out of the hospital before she is ready--so now the docs have to deal with Rambo Mom.

Until tomorrow keep praying!!!

Love-- Jeni, Doug and Melissa

P.S. Happy Birthday Ramma!!!!!!

Tuesday, May 6, 2003 5:19 PM CDT

Day 26 after transplant!!

It must be because I have been here alot in the last two weeks, but it seems like we have been here forever. I can only imagine what it must feel like for Melissa. No wonder she has had a fit the last few days when they try to take her blood pressure. Thank God she still has her fighting spirit...

Today was pretty good. Her pain med was turned down some more and is close to being turned off. The paramater for her platelets was raised back up to 50 and the clotting drug that she was getting was stopped. The reason for this is that she is still having signs of blood in her urine and the doctors want to see if higher platelets will stop it. The amount of nutrition (now Pediasure) was upped to 30cc per hour and so far so good. This afternoon a sample of her urine was sent for a culture to see if she has something growing that would cause the blood in it.

Our only visitors today were from Dance Marathon. Beth and Becky took Melissa for a walk, to the big playroom, and played ball. Since my day once again started at 4am, I was greatful for the break. Right now we are waiting for Grandpa to get here. He is planning on staying with us in Melissa's room so that he can have "the hospital experience"...this from a guy who has always hated anything medical...he loves Melissa alot!

Melissa's counts today---

Platelets--45 this morning (transfusion) 86 this afternoon--Normal is 150-400
White Blood Cells--11.2--Normal is 4.0-12.0
Hemoglobin--9.3--Normal is 10.9-15.0
Hematocrit--27%--Normal is 31%-44%
Absolute Neutrophil Count (the good white cells)--8613

Jeni and Doug will be back tomorrow morning to relieve us for a while. They have been busy working on their house and also are faced with getting the 5th wheel ready for Melissa's eventual discharge from the Pediatric Bone Marrow Transplant Unit.

Keep us in your prayers and thoughts!

Love,
Melissa & Grandma

Monday, May 5, 2003 4:26 PM CDT

Day 25 after transplant!!

Today was a day of maintenance. She started her day and Grandmas at 4am when Rochelle came in for her blood draw.
Her potassium was low, her platelets were low and her hemoglobin was low. We received potassium, platelets and blood which took a good part of the morning. After all of this it was time for her dose of IVIG (immunogobulin for her immune system). This took until around 3pm. We went for a short walk and were back in her room by 4pm for another dose of potassium because the one this morning did not bump her count up high enough.

Greatgrandma & Greatgrandpa Pudil came today to help Grandma cope. Melissa had visits from Kathy from Child Life with a craft project, Kirsten from Music Therapy with music and games, and Mariah from Child Life for her walk and some fun playtime.

We have gone a little over 12 hours with no nausea, but now I have probably jinxed us. We are hoping to ease away from that aspect of her transplant. She still refuses to drink or eat, but today did use a mouth sponge with water in her mouth.

Melissa's counts today--

Platelets--22 this morning (transfusion) 68 this afternoon
White blood cells--15.9 (after GCSF shot)
Hemoglobin--8.0 (transfusion)
Hematocrit--24%
Absolute Neutrophil Count--12243 WOW!

Please continue to pray us through this recovery period.

Love,
Melissa & Grandma

Sunday, May 4, 2003 4:26 PM CDT

Day 24 after transplant!

Good day today. When we got here this morning Melissa was dressed and ready to go. We spent most of the day on the go. Melissa walked quite a bit more today than yesterday. We did go outside this morning for a breath of fresh air but had to stay under the awning of the hospital because it was rainy and cool.

The only problem we have today is a serious case of sore bottom. We are treating it with Miracle Butt Cream and hope that it works.

Melissa was sitting in her stroller while I was typing this and got sick. We got her cleaned up and gave her some Benadryl. She only wants Grandma and wants to go for a walk. Grandpa is getting ready to go--hoping he misses the worst of the storms. I hope Grandma can cope when he leaves. He will be back Tuesday night and right now we are planning on both staying in Melissa's room with her that night.

Melissa's counts today--

Platelets--56 this morning
White blood cells--3.5 (GCSF shot tonight)
Hemoglobin--9.0
Hematocrit--27%
Absolute Neutrophil Count--1925

That's all for now. We are being 2 and have a one track mind, so I guess we will take a short stroll before Grandpa leaves.

PLEASE keep praying for all of us!!

Love,
Melissa, Grandma and Grandpa

Saturday, May 3, 2003 6:56 PM CDT

Day 23 after transplant!!

Shift change at the hospital. By now it's safe to let everyone know that Jeni and Doug went home today so that they could be there for Chrissy's prom. I hope she was surprised. Grandma will be here until Wednesday morning...then Jeni and Doug will be back.

J&D left around noon and soon after Melissa got sick. She got Benadryl to ease her nausea and then had a nap. After her nap she sat on the couch with Grandma and Grandpa and let Grandpa finish watching the Cardinals baseball game. Mariah from Dance Marathon was in to play with Melissa.

One of the reasons Melissa was sick at noon was because she got a dose of the drug Regelan (the drug that is supposed to "make her gut work"). The doctor suggested that for her afternoon dose it get added to her formula. The nurse did that and Melissa immediately started acting uncomfortable and nauseaus. We discussed the fact that "her gut is working" and that neither the nurse nor we could see any point in continuing this particular medication. Keely called the doctor and Melissa will no longer be getting this drug. Keep your fingers crossed that this helps the nausea and that maybe she will be interested in eating.
We stopped on our way back from one of our walks at the nutrition room and when Melissa saw the refrigerator she wanted a piece of cheese. I think G & G will run to the store before we come in tomorrow so we will be ready in case she asks again.

Melissa's counts--

Platelets--16 this morning (transfusion) 71 this afternoon
White blood cells--6.1
Hemoglobin--9.9
Hematocrit--29%
Absolute Neutrphil Count--Not available

We just got back from a long walk. We walked down the hallway from her room and looked out over a playground where a little boy and his parents were playing. We watched them for a very long time and promised Melissa that when she is better we will go out and play too.

Keep the prayers going for Melissa. There is nothing we would like better than to play in the playground.

Love,
Melissa, Grandpa and Grandma

Friday, May 2, 2003 8:31 PM CDT

Day 22 after Transplant!!!!

Mom and Dad are back!!! Today started out to be a good day. When we got here Melissa was in a rather good mood. Last night was good she only got sick once at 8:00 p.m. our nurse last night decided to take it upon herself to put Melissa on every 4 hour Zofran(anti-naseau med). It worked--now if we could get the rest of the nursing staff to follow in her steps--rather than only giving it to her when she gets sick we would all be better off.

Melissa made a milestone today--she got to go outside the hospital twice today and we walked all over the hospital. She even walked from her room to the activity room in her ward.

The PA--Steve--said today that he could see us getting discharged in about a week. As long as Melissa is ready and physically up to it I don't care. My only stipulation is that she can't get a transfusion of anything for atleast 2 consecutive days.

Aunt Kay Pudil came to visit us today--that was a surprise. She had a gift for Melissa, a fresh Color Wonder Coloring Book and a packet of refill paper also Color Wonder. Color Wonder is a special kind of paper that only certain markers work on, also the markers don't write on clothes or fabric or walls or anything. It's WONDERFUL!!!

Melissa had a few episodes of throwing up today due to lack of Zofran. The worst one of all was when I was rocking her and the nurse came in to give her her tummy medicine and obviously it works because she began to throw up everything in her tummy including her NG tube. That was quite an experience she has never thrown up the NG tube before. On top of all of that she was throwing up so hard that she pooped her pants and because it is so runny she ended up pooping on mom. Yuck!! Let's just say scrubs were made for skinny people with extremely long legs. That's not me!!!

Melissa's counts today--

Platelets--51 this morning and 30 this afternoon--no transfusion her cut off is 30
White blood cells--11.3
Hemoglobin--10.6
Hematocrit--31%
ANC--8362

Hopefully tomorrow isn't as eventfull. Thanks for the messages on the guestbook.

Love--
Jeni, Doug, and Melissa

Thursday, May 1, 2003 5:56 PM CDT

Day 21 after transplant!

We had a pretty good day today. Melissa's counts were awesome (see below). She did need a platelet transfusion this morning, but I am thinking this will be pretty much a daily thing until her stem cells kick in. The doctors have decided that today was the day to try and stimulate her digestive system. They started giving her small amounts of formula through her NG tube. She still will not swallow anything...I imagine that she thinks it will still hurt like when she had mouth sores. We are seriously considering letting her have her bottle back. Jeni figures that anything to help her start swallowing will be a plus...we can always break her from the bottle later.

I started entering this info for you because Melissa was sitting in the big rocking chair playing with Mr. Potato Head (she comes up with some interesting body part combinations). Now we have switched to her other favorite pasttime--reading the phone book. We are waiting for Grandpa and Mom and Dad to come. Yes, tonight is shift change. I will be back again...soon.

Some things that happened today--Kirsten from Music Therapy was in and she sang songs to Melissa and played with the "Shake Shakes" and the ladybug balls and the ducks in the bowl of water. Melissa weighed 17.1 this morning and 15.7 this afternoon---we still haven't figured that one out yet. We have our new shoes out in case Mom and Dad want to take Melissa for a walk. We need to work on our walking so that we will be ready to be discharged.

Melissa's counts today--

Platelets--42 this morning (transfusion) 94 this afternoon
White blood cells--11.9 (had a GCSF shot last night)
Hemoglobin--10.6
Hematocrit--30%
Absolute Neutrophil Count--8568

Jeni will take over with tomorrows entry. I will be back again.

Thanks for all the messages that have been left. You can't begin to imagine (unless you've been in this situation) how encouraging and helpful and uplifting it is to know that you are all caring for us!

Keep praying!!!!

Love,
Melissa and Grandma

Wednesday, April 30, 2003 5:49 PM CDT

Day 20 after transplant!!

This was a crabby day for Melissa. The doctors were in this morning and turned down her pain med a little more and raised her volume on her pedialyte intake. I don't know if this is what has caused her to be "out of sorts" but she has definitely had her moments today.

She started her day with a platelet transfusion and then got a hemoglobin transplant after that. She did have times when she was playful, but she was mostly just uncomfortable.

Greatgrandma and Greatgrandpa Pudil came back to help today. Greatgrandma and I took her for a walk down the hall on this floor this afternoon because she was good and sat on the scale for the nurse. When we got back to the room, she got sick. So we made her really mad by giving her a bath and a dressing change for her Hickman (the port that they use to give her IVs and draw blood).

Melissa's counts today--

Platelets--42 this morning (transfusion) 85 this afternoon
White blood count--3.0 (did not get a GCSF shot to stimulate cell growth last night but will get one tonight)
Hemoglobin--8.6 (transfusion)
Hematocrit--25%
Absolute neutrphil count--420

Be sure to check the photos on the web page. Aunt Kay Pudil provided the photos (Thank You, Aunt Kay!) and Jeni got them put on the site. Now you can all see what a beautiful child we are praying for!!!

Please keep the prayers coming!!! We appreciate each and every one!

Love,
Melissa and Grandma

Tuesday, April 29, 2003 6:59 PM CDT

Day 19 after transplant!

Melissa had a good day after starting the day by erping all of her meds. The doctors came in and decided to try her on a new med that will (in their words) "get her gut to work". They then tried her back on her pedialyte feeds at 5cc per hour. So far so good--she has not been sick yet. They also reduced her pain medication to .9. She had an echocardiogram this afternoon that we had to go down to pediatric cardiology for. Her heartrate has been running in the 140's all day (except when she gets mad) but they wanted the echo just to check how she is doing. The report came back that there has been no significant change from before she started this procedure. That's good!

Greatgrandma and Greatgrandpa came down this morning to visit and help me with Melissa. They brought presents for Melissa (a notebook and different colored pens for her to write with and 2 books from Aunt Jan, Uncle Neil, Amanda, Trevor and Blake). Melissa likes her presents.

Kathy from Child Life came in and helped Melissa make tissue paper flowers for Mom for Mother's Day. Surprise, Mom!

Melissa's counts today--

Platelets--36 this morning (transfusion) 71 this afternoon
White blood count--3.8
Hemoglobin--9.5
Hematocrit--28%
Absolute Neutrophil Count--1368

I thank you all for your prayers...please continue to pray for our recovery and remission.

Love,
Melissa and Grandma

Monday, April 28, 2003 7:48 PM CDT

Day 18 after transplant!

Grandma is back! Today was pretty much like the others. We didn't get here until noon. Melissa slept most of the afternoon until her mom and dad left. Then she decided that she wanted to go in her stroller. Grandpa put her in her bed to have her pants changed and she decided to throw up. Michelle (her nurse) gave her some anti-nausea meds and we got her cleaned up and went for a walk. We ended up on the 8th floor and met a nice volunteer who gave Melissa a sock monkey with a bright pink hat. Needless to say, we walked and walked and walked and she still pitched a fit when we went back to her room. She was sick one more time before Grandpa left, but felt well enough after that episode to tell him "Love you" when he left and to tell him to bring "her van" when he comes back to get Grandma.

Aaron from Dance Marathon came in to play with Melissa and that is giving me time to work on this. Aaron's grandparents (Paul & Rosemary Anderson and Bill & Marlene Weigel) are from New Hampton which is where I am from. Small world, huh?

Melissa's counts today---

Platelets--23 this morning (transfusion) 67 this afternoon
White blood cells--5.4 (down because they stopped her GCSF shot which stimulates WBC growth)
Hemoglobin--9.5
Hematocrit--27R>Absolute Neutrofil Count--3942

She is scheduled for an echocardiogram tomorrow afternoon. Her heartrate is still elevated but has dropped to the 140's from the 160's that it was running last week. Let's pray that the test comes back good.

Guess that is about it for now. Keep us in your thoughts and prayers.

Love,
Melissa and Grandma

Sunday, April 27, 2003 5:45 PM CDT

Day 17 after Transplant!!!!

Today has been a rather good day. When we got here this morning Melissa was sitting in the big rocking chair watching Barney. She got sick once last night about midnight and didn't get sick again until about 12:30 this afternoon. Luckily, it was only flem--no blood this time. She then wanted to be in her stroller and go "That Way". So we got a mask and cut it down to fit her face and we went for a walk. Today was the first real day that she has been able to go off the unit, we went to visit a friend(Connor/Batman) who is in for a fever, and she also got to ride in the elevator to go up to the 8th floor and look outside. When we returned to her room she watched TV for awhile and the nurses could do their assessment. She wanted to go "That Way" again so I asked if she wanted to walk and she agreed. So we put on her shoes, she is still very weak, but she did walk around the unit with support. (She hasn't walked since April 6th)

Melissa's counts today--

Platelets--95 this morning and they didn't check this afternoon since this morning was so high
White blood cells--12.3 YEAH!!!!!
Hemoglobin--10.3
Hematocrit--30%
ANC--10578 YEAH!!!!

Melissa's stools are testing positive for blood which they figure is due to all the bloody noses just now passing through her system. If she was bleeding internally her platelet count would be low which it isn't.

Thanks for your prayers and messages on the guestbook.

Mom will be back to sit with Melissa on part of Monday-all of Tuesday-all of Wednesday-and part of Thursday, so I can go back to work and start getting the house ready to come home.

Love--
Jeni, Doug and Melissa

Saturday, April 26, 2003 6:48 PM CDT

Day 16 after Transplant!!!!

Today was really boring. When we got here this morning Melissa was sitting in Puk--so right off the bat we had to clean her up. Dad played with her while mom cleaned up the room and changed bedding. Her room looks like Toys R Us so I went through them to seperate hospital's from ours. It's almost even. Melissa had a rough night she was sick quite often. They turned off her feeds and disconnected her feeding tube from the one in her nose. She spiked a temp last night so the doc on call today put her back on an antiboitic. And if she keeps throwing up they want to put a bigger tube down her nose into her stomach to suck out everything in it. Instead of the little one in there now that is suppose to be for feeding. Of course I think they are trying to rush her into eating before she is healed--obviously--but I'm just the mom I don't know my child or anything. As you will notice on Melissa's counts they uped her platelet range back up to help with the nose bleeds.

Melissa's counts today--

Platelets--41 this morning (yep transfusion)/61 this afternoon
White blood cells--9.3 YEAH!!!!
Hemoglobin--11.2
Hematocrit--32%
ANC--6510

We hope to have visitors tomorrow, maybe we won't all sleep all day and be bored.

Thanks for checking the site and remember to sign the guestbook it gives us enjoyment everyday.

Later--
Jeni, Doug and Melissa

Friday, April 25, 2003 7:33 PM CDT

Day 15 after Transplant!!!!

She had a pretty good night--not to much to report anyway. This morning her weight was up 16.7kg so of course she got lasix which in turn brought her down to 16.2kg this afternoon. Her heart rate is still high 160-180 so Dr Goldman wanted a chest x-ray to see if her heart was enlarged. About 1:00 this afternoon we got the call to go over to x-ray---Yes she finally got to go off the unit and across the hall to get it done. Although she had to wear a mask she didn't mind other than it was too big and kept poking her in the eye. We have to figure out how to modify it to fit her little face. About 4:00 Steve the PA came in and told us that he looked at her x-ray and her heart is within normal limits he thought--we won't know exactly until the radiologist looks at it--so I would be suprised if we had any final results before Monday.


Melissa's counts today--

Platelets--51 this morning and 19 this afternoon(yep transfusion)
White blood cells--7.8 up a whole 2,000 cells from yesterday
Hemoglobin--9.0
Hematocrit--25yep she got blood this morning)
ANC--4680

Melissa has been a lot more active today we had several visitors--Kirsten and friend from Music Therapy they sang, shook shakers, threw lady bug balls, and played with the froggies in the water. Melissa had a great time. This afternoon Ericka and friend from Dance Marathon came in to read books--Melissa fell asleep(she gets that from her mom). Tonight Meredith and Andrea--nurse and nursing assistant--from the other side of the world came to see how well she is improving. Melissa likes it when people come to see her.

Remember to sign the guest book so we know you were here.

Later--
Jeni, Doug and Melissa

Thursday, April 24, 2003 6:54 PM CDT

Day 14 after Transplant!!!!

Today has been rather quiet. I am exhausted after working more in the last three days at work than I am use to. All that will change soon when Doug and I come home from now on I won't be working all the hours I've been, so we can get the house ready to bring our bundle of joy home (we are replacing all of the flooring and repainting all of the ceilings and maybe replacing wall coverings too).

When we got here this morning Melissa was still sleeping. I talked to the morning nurse to get the low down on last night and she slept all night and of course she did throw-up once. Her baby was face down in the tub of water in the shower when we got here so I already figured she had gotten sick. After she woke up she got her pants changed and wanted out of her bed so we put her in the rocking chair and she hasn't left it yet except to have her pants changed and get weighed (16.2 this morning and 16.3 this afternoon). The worst/most devastating part of today was that Dr Goldman ordered her to have a Ng tube put in today to get her tummy use to having something in it again and to get her ready for food someday. So this afternoon the nurse and nursing student came to put it in and of course who would have thought she threw up as soon as it was in and of course the nostril they put it in started to bleed right away. Today they started her on 5cc every hour (1 tsp) of Pedialite after 12 hours she will get increased to 10cc per hour, when they think she is able to tolerate that they'll switch her to Nutren jr. for her nutrition and get her off of her CVN and Lipids. As soon as she is eating and drinking like she use to they will pull her Ng tube out. (Especially since I told the nurse today that we weren't going home on a feeding tube again or I will pull it out of her nose myself right in front of the doctor) But you all can't imagine me saying or doing anything like that can you???

Melissa counts today--

Platelets--55 this morning and 28 this afternoon(yep transfusion this afternoon)
Hemoglobin--7.9 (yep transfusion this morning)
Hematocrit--23%
White blood cells--5.8
ANC(absolute neutrophil count)--4640

Her neutrophils are the good part of her white blood cells which means she has 5,800 white blood cells and 4,640 of them are the good ones. Which is AWESOME!!!!!! Her mouth is getting better every day.

I think that's all for today if not I'll add it on with tomorrows.

Glad to be back we missed our Punkie!

Take Care of you and yours--
Jeni, Doug and Melissa

Wednesday, April 23, 2003 6:13 PM CDT

Day 13 after transplant!!

Today started for Melissa with continued nosebleeds and nausea. She received a transfusion of platelets this morning and is now receiving another one. After the transfusion is finished it will be bath time and that is why I am doing the journal now.

It was a pretty quiet day. She did play ball with Grandpa and some of his antics had her laughing. It is so good to see her laugh.

Dr. Goldman said this morning that by day 25 her platelets should be coming back. Oh boy, 2 more weeks!! We just have to remember to take it one day at a time and keep a positive outlook...when God is involved there is always hope. (I read this earlier this week)

Melissa's counts today--

Platelets-- 44 this morning 20 at noon (transfused both times)
White blood cells--4.4
Hemoglobin--9.6
Hematocrit--28%

Mom and Dad will be back with Melissa this evening and into next week. I haven't heard when I will be back yet, but I will be back next week for sure.

Keep the prayers coming Melissa's way...she is such a precious little girl.

Love,
Melissa, Grandma and Grandpa

Tuesday, April 22, 2003 6:12 PM CDT

Day 12 after transplant!!

Today was a very quiet day. Other than a few nosebleeds and the resulting vomiting of blood clots, all was quiet.
The good news of the day was that her white blood count was up to 3.0 this morning. She had periods of energy and then took a nap. Right now she is napping. This is good because Grandpa is coming tonight and I am sure there will be plenty of playing after he gets here.

Kirsten came with music for Melissa--something Melissa always enjoys. Melissa had six shakers going at one time. She also enjoyed throwing the balls into the drum and helping Kirsten read/sing "This Old Man". Melissa did alot of smiling and even had a few laughs. Kathy from Child Life came in soon after Kirsten and saw that Melissa was sitting in the big rocking chair. She thought she looked just like a queen and took her picture with the digital camera so that Mom and Dad and Grandma and Grandpa could have copies.

Melissa's counts today--

Platelets--29 this morning (transfusion) 74 this afternoon
150-400 is normal
White blood cells--3.0 4.0-12.0 is normal
Hemoglobin--10.6 10.9-15.0 is normal
Hematocrit--30% 31-44 is normal

We appreciate all of the thoughts and prayers and the messages left on the guestbook.

Keep on praying...I know God is listening!!

Love,
Melissa and Grandma

Monday, April 21, 2003 6:56 PM CDT

Day 11 after transplant!!

I thought I would get the entry done earlier today. Melissa is sitting in her stroller watching the "Bampa" video...a tape that was done in 1994 when Bob and his dad resided our house.

We had a much calmer day today. Less than a half dozen fits were thrown. Most of those were done because she was in the stroller and wanted to go "that way" (as she points her finger out the door). Actually, she can go out--she just hates it so bad when she has to come back in.

Melissa's counts today--

Platelets--24 this morning and 47 this afternoon
White blood count--1.9
Hemoglobin--8.5 this morning around 10 this afternoon
Hematocrit--25% this morning 31 this afternoon

Dr. Goldman (head of transplant) said he was very happy with her white blood count. Her mouth sores and mucusitis are improving greatly and should continue to do so as her WBC increases. She is still gaining weight and she got lasix to help her pee and albumin to draw water from the tissues into the blood so that she can eliminate that also. This afternoon they dropped her platelet parameter to 30 from 50 (so she will not get platelets for her afternoon count)and they decreased her dilaudid (pain med) by .6. She was also taken off of one of her antibiotics today. These are all signs that she is improving and on the road to recovery. However, those of you familiar with transplant know that the road to recovery is longer than her stay in the hospital.

We had visits today from Greatgrandma and Greatgrandpa Pudil. That really helped me alot. It is really hard to cover all the bases when you are in the rocker with her and can't reach anything. They also let me take an almost hour nap. I really needed that!

Melissa also had a visit from Kathy (Child Life) who brought in new toys (Bob the Builder) and played with her and read her books. Melissa enjoys her visitors!

I am hoping for a better night tonight. She only slept in her bed for a few hours last night...the rest of the time I sat in the rocker and held her while she slept.

Keep us in your prayers--I know they are working !!!

Love,
Melissa and Grandma

Sunday, April 20, 2003 11:19 PM CDT

Day 10 after transplant!

Grandma took over today and all I can say is "Why me?"

Melissa's counts are coming up and she is talking more and wanting to be back to normal and she is not. As a result she is very grumpy and very clingy and very possessive.
She is prone to temper tantrums and wants things a certain way but doesn't always know what that way is. I can only imagine how frustrated she is. We are hoping that as her counts improve so will this latest temperment.

Greatgrandma and Greatgrandpa Pudil were here today with Greatuncle Jim. Melissa had many Easter presents to open, mostly clothes...she will be a very fashionable girl when she gets out of here.

Grandpa left to go home at 8pm and I held Melissa until 11pm. She is so tired of being in her bed that she absolutely refuses to be put in it. We had one slight problem tonight. Her tubing that carries her meds to her had to be changed (this is done every 4 days). A little while after this was done the nurse came in and noticed that there was blood all over the floor. Melissa new tubing had split and instead of the meds running in the blood was running out. I hadn't noticed it because I had Melissa, two pillows, a blanket, a doll and a rabbit in my lap. Anyway, the end result is that blood and platelets are on their way.

Melissa's counts today--

Platelets--36 this morning,55 this afternoon, 48 tonight
White blood cells--1.7
Hemoglobin--11.2this morning, 8.9 tonight
Hematocrit--32%

It is now 11:30 pm and I am trying to type this in the dark. Melissa finally was so tired and asleep that Becky (her nurse) was able to put her in bed. I am going to go lay down and try to get some sleep because I know I will probably be up holding her in the night.

PLEASE keep praying for us--especially Melissa.

Love,
Melissa and Grandma

Saturday, April 19, 2003 5:49 PM CDT

Day 9 after Transplant!!!

Today has been very stressful for Mom Dad and the Nurses. For some reason when your child's counts are coming up they turn into the devil or atleast Melissa did. Needless to say Grandma will have a lovely 3 days down here while we go back home so I can go to work and Doug can fix all the broken trucks we own. Melissa's weight is alot better today than yesterday 14.8kg (32.6 lbs) this morning and 14.1kg (31.02 lbs) this afternoon, our baseline weight when we started this was 14.8kg so she's doing good. She hasn't eaten anything yet but she did have a drink of pop out of her tippie today. People from Dance Marathon came in to visit today and let her pick out a bunny, jelly beans, and a bag of seeds to plant (mom picked everything out since finally she fell asleep). She is back to her bloody noses again although today it was both nostrils instead of just her right side so of course she's got salt pork up both nostrils and a 2x2 gauze pad taped to her nose to keep her out of it and keep the salt pork in. (It looks like someone smacked her good)

Melissa's counts today--

Platelets--30 this morning yes she got transfused/77 this afternoon (150-400)
White blood cells--1.4 thats why she is the devil (4.0-12.0)
Hemoglobin--11.3 thats normal
Hematocrit--33% thats normal

As you all should know by now--Mom will be back to do the Sunday, Monday, Tuesday, and Wednesday journal entries while I go back to work we will be back on Wednesday late afternoon/early evening.

Pray for Grandma too as she will be the one who needs it. Melissa's prayers are working well too. And who ever keeps praying for her to act like her mother it's working. Thanks!


Until next time--
Jeni, Doug, and Melissa (devil girl)

Friday, April 18, 2003 8:30 PM CDT

Day 8 after Transplant!!!!

Today was a rather good day not much to write I think. When we got here this morning Kirsten--Music Therapy was already here (You know the early bird gets the worm). After she left Ericka--Dance Marathon came in to play but ended up reading books, Melissa was very content. Her big sister Chrissy came to visit and her friend Tonya. It's always nice to have visitors it makes the day go by faster. Although Melissa didn't want anyone but her sis and wasn't going to let her go home. We watched alot of Barney today oh yeah! Her temp went down in the middle of the night and so did her heart rate. We were fighting with her SPO2 (oxygen in her blood) levels today but we figured out why--She just threw up alot of mucusitis and blood clots from her mouth being so sore and finally pooped everywhere (it's only been since april 7th that that has happened). Her weight this morning was 15.7kg (34.5 lbs) this afternoon it was 16.1kg (35.4 lbs) so of course she got lasix.

Melissa's counts today--

Platelets--42 this morning yes she got a transfussion 59 this afternoon (150-400)
White blood cells--0.5 on our way up (4.0-12.0)
Hemoglobin--12.0 normal range
Hematocrit--34% normal range

Thanks for the visitors and the turn around day we had today. Keep praying.

Until next time--
Jeni, Doug and Melissa

Thursday, April 17, 2003 7:36 PM CDT

Day 7 after Transplant!!!!!

Everyday gets a little closer to feeling better. Today wasn't horrible but wasn't overly eventful. Still mucusitis and mouth sores--high heart rate although now it is 147 the highest we hit today was 224(Do you think she was really mad?)--normal blood pressures--and of course we have the lovely spiked temp back the highest it ever got was 38.9degreesC which is 102.0degreesF. They did a central venous pressure test today and she was a 3 (4-10 is normal) so the way it was explained to me was her pipes(veins/vessels) are a little dry which her pipes have little holes in them and the fluid is leaking out into her tissue so when they give her lasix it's not pulling as much fluid as if she didn't have these holes so they put her on a steroid again to seal the holes and pull the fluid from her tissue back to her vessels so the lasix can do what it is suppose to do. She did get platelets at 5:30 a.m. so you will see an increase on her platelet count later in the journal entry. She did get a unit of red cells not because she was low but because she would have been and it's always harder to play catch-up. We have been able to suck out a bunch of crap today which helps. Dr Goldman was in tonight and said by looking at her chart of counts that she is at the corner for the turn around where they will be coming up. And per Dr Goldman "They don't like it because I am never wrong." So lets hope he is right. Not like we've been here for a long time but if she felt better it wouldn't seem like so long.

I'm going to list the normal range for her counts by request!!

Todays counts--

Platelets--40 this morning 51 this afternoon (150-400)
White blood cells--0.2 YEAH up from yesterday--I gave the shot last night-- (4.0-12.0)
Hemoglobin--9.4 (10.9-15.0)
Hematocrit--27% (31%-44%)

I gave her GCSF shot tonight too so hopefully her white count is even higher tomorrow.

Melissa had a few visitors today--Kathy from child life gave her a Beanie Baby Bunny--Kirsten from Music Therapy came in to sing to her--Aunt Ruth and Friend Mia also came to visit with her and Mom and Dad.

Thanks for the Prayers they're working!!!

Love--
Jeni, Doug and Melissa

Wednesday, April 16, 2003 6:35 PM CDT

Day 6 after transplant.

Melissa had a good day today after a not so good night. She was sick in the night and had to have another platelet transfusion early this morning. Her afternoon platelet count is only two above her limit, so I imagine we will be getting another transfusion after her blood tests early tomorrow morning. For those of you not familiar with the transplant procedure, this is quite common to get lots of transfusions--especially platelets--platelets are the last thing to recover.

We do think she is starting to climb up the hill after bottoming out. She sat on my lap while her bed was being changed and ended up staying there for over an hour. She and Grandpa played "piggies" and read books. The books were touch and feel books, and she would touch the things and turn the pages. Grandpa was playing peek-a-boo with the book and she would hit the book while he was behind it.
This was so much more than she was doing the last two days. But the biggest moment of the day was when she said "Barney". She had not said anything since Sunday, so this was really great. Of course, after she said this we put in the Barney of her choice and she watched it sitting up in her bed until she fell asleeep (yes, while sitting up).

Melissa's counts--

Platelets--34 this morning 52 this afternoon
White blood cells--0.1
Hemoglobin--10.0
Hematocrit--29%

This is Grandma's last entry for this week...Jeni and Doug will be back tonight. I will return next Sunday for a few days and I'm sure we will have only good things to report!!

Keep Melissa in your prayers!!

Love,
Melissa & Grandma

Tuesday, April 15, 2003 7:12 PM CDT

Day 5 after transplant...one day closer to being better!

Today pretty much followed the routine of all the other days. Melissa is still battling a serious case of mucusitus, although several of her nurses have said that they have seen worse. We just need those white cells to kick in. The salt pork plug that was put in Sunday night to stop her nosebleed came out this afternoon. This should keep her oxygen levels ups...they are keeping track of her oxygen levels because part of the mucusitus can cause her tounge and mouth to swell and reduce her oxygen intake. If I understood Dr. Vibhakar last night she should be pretty much past the window of time when that could happen. The only other change today was that her pain med dosage was increased a small amount. (She is not close to her maximum dosage.) She also received a platelet transfusion this afternoon. She was much more alert today.
Melissa's counts today--

Platelets--63 this morning and 32 this afternoon
White blood cells--0.1
Hemoglobin--11.6
Hematocrit--35%

Melissa's blood pressure was running pretty high last night,but today is back to normal. Today her heart rate is elevated and we are hoping that it comes into line as her stem cells decide they are supposed to be working.

Today Melissa had visits from Kathy (with books) and Kirsten (with music). She also received a cute teddy bear with two balloons from the girls at Professional Management. It reminded me of the last visit she made to the office and had to give to hugs and kisses to everyone in sight before she could leave with Grandma.

Each day seems to bring little improvements; so I'm sure everyone's prayers are working. Please keep praying for her and for the miracle that is happening in her little body.

Love,
Melissa and Grandma

Monday, April 14, 2003 7:27 PM CDT

Day 4 after transplant.

Last night after our entry in the journal things really started to happen. Melissa got a "mega" nosebleed that 3 nurses finally got under control with the oldtime remedy of salt pork. After struggling to get the bleeder stopped, she looked like she had been in quite a brawl. Luckily, she looked alot better after she was cleaned up. She ended up getting two units of platelets and one of blood. Her night after that was pretty peaceful.

The docs were in this morning and think she is progressing pretty much as expected. She still has mucusitus and will have until her white blood cells come back. They did increase her pain medication slightly so that she would be more comfortable. She also got lasix to take some of the excess fluid off that she is retaining from her various meds.

Melissa's counts today--

Platelets--164 this morning and 106 this afternoon
White blood cells--0--down from yesterday
Hemoglobin--11.7
Hematocrit--34%

Melissa had visits from Kirsten for music therapy, Kathy from child life, and got a big stuffed Easter Bunny from the dance marathon group through the Miracle Network.

We will continue to stay the course and pray that our white cell count is up tomorrow.

Keep Melissa and all of us in your prayers!!!

Love,
Melissa and Grandma

Sunday, April 13, 2003 7:06 PM CDT

Let's see how Grandma can do with Melissa's news.

This is day 3 after transplant!! Things are still very quiet with Melissa sleeping alot (yes, she can even sleep sitting up--we have pictures to prove it). They tell us that sleeping is one of the best things for her recovery right now.

We are still dealing with mucusitis and mouth sores. This afternoon Grandpa and I helped hold her down while the nurse suctioned the "yuck" out of her mouth...a necessary evil as otherwise she will hold it in her mouth until she gags.

We have also had a few nosebleeds today. Her afternoon blood tests showed that her platelets are low and a transfusion has been ordered.

Melissa's counts today--

Platelets--64 this morning and 28 this afternoon
Hemoglobin--9.6
Hematocrit--28%
White blood cells--0.3 (up from yesterday)
Neutrophils--too low to count

This will be an interesting next couple of days for me. I will be staying in Melissa's room with her...hopefully she won't mind a roommate.

KEEP US IN YOUR PRAYERS!!!!!!

LOVE--
Melissa & Grandma

Saturday, April 12, 2003 7:20 PM CDT

Day 2 after Transplant!! Well today was rather quiet. We still have mucusitis and a few mouth sores but they are slowly getting better. She slept right through her dressing change today which has never happened before. Of course I asked if we could take some dilaudad(pain medicine) home with us--the answer was no. Melissa got a bolus of phosporous(sp?) this afternoon and of course she needed platelets again--what a surprise. She was awake a little more today than yesterday. Which Rich our nurse said the GCSF should be taking a hold soon which will raise her white blood cell count and take care of the mucusitis and mouth sores which hopefully then she will be able to be weened(sp?) off of her dilaudad.

Melissa's counts today--

Platelets--68 this morning and 39 this afternoon
Hemoglobin--9.5
Hematocrit--28%
White blood cells--0.1
Neutrophils---to low to count

This will be my last journal entry until Wednesday--I am turning the website over to my mom Sunday-Monday-Tuesday so I can go home and go back to work. Unfortunately even when we aren't home the bills just won't stop.

TAKE CARE AND KEEP PRAYING!!!!!!

LOVE--
Jeni, Doug & Melissa

Friday, April 11, 2003 7:39 PM CDT

Well what a joyous day it is turning out to be. When we got here this morning Melissa looked better than she has in the last few days. Although as the day has progressed it has only gotten worse. As you see it is 7:30 p.m. and she has been constantly crying for the last 2 hours and screaming "OUWIE" but won't tell us what hurts. The nurse figured out that one of her tubing caps that isn't suppose to come off(that's why they use this type of tubing)did come off. They took her off of her Morphine and changed it to another med like Morphine called Dilaudid. Which after fixing her tubing her pain med has caught up with her. We figured out that she was without any pain medicine for atleast one hour--way too long for someone who is way dependent on it right now.


Melissa's counts today--

Platelets--119 this after noon 88
Hemoglobin--9.2
Hematcrit--28%
White blood cells--0.1

We are still on GCSF which hasn't worked yet--you know me an anxious mother that wants everything to happen over night but this stay I'm not so bad since I know after being totally wiped out it is going to take a while to come back.

Remember to keep signing the guestbook so we know you were here to visit us.

TAKE CARE!!!!!

LOVE--
Jeni, Doug & Melissa

Thursday, April 10, 2003 7:35 PM CDT

Well we did it!!!! Stem cells are in 17 million stem cells in 17 minutes. She got prep-meds at 2:00 p.m. and transplant started at 2:30 p.m. by 3:20 p.m. we were totally complete vitals and all. After all of the drama of the transplant we then needed platelets, red cells, and a potassium bolus. Because of all the fluids today we gained @ 2 pounds which makes over 34 pounds total. Due to that we needed lasix to relieve the extra body weight. Before to long she will be peeing over the moon. Her mucusitis should be gone by wednesday 4-16-03 or so which should help her mood and get her back to feeling better. Child Life threw Melissa a Transplant Party with a giant sign and gifts--she got an Amazing Baby that talks and a Pound Puppies doctor kit and puppies. Melissa got to start a new medicine today to add to her mile long list of meds she's taken--it's called Amicar--something to do with clotting since the way they explained it her mouth looks like road rash. YUCK!!!!

Melissa's counts today

Platelets--40 anything under 50 she will get transfused
Hemoglobin--8.5
Hematocrit--26%
White blood cells--.1
ANC---to low to count

We started GCSF tonight at 7:00 p.m. to stimulate those new cells to make the blood product to get those counts up and get us on the fast road to recovery. Steve the PA told us about a week to 10 days for her counts to recover.

Aunt Kay Pudil sent me some pictures to add to the web site but I need to figure out how to get them here so tomorrow Dom the doctor/nurse/computer guy is going to help me get them over here from my e-mail file. So check tomorrow for possible pictures.

Better close for now. I'll have more new fun information tomorrow for ya all. 'Til then.

Love--
Jeni, Doug & Punkie

Wednesday, April 9, 2003 8:11 PM CDT

Well let's try this again! Since I was almost finished with todays journal entry and somehow deleted it. Go figure lap tops aren't all they're cracked up to be.

Today was a rather slow and boring day. At 2:30 a.m. Melissa spiked a temp (38.3) and had cultures drawn. Nothing has grown yet but they started her on Vanco to get a jump start on anything that might be growing. Also she has come down with mucusitis(sp?) and mouth sores so to relieve the pain of those they started a Morphine drip which as we put it she is "Medically sleeping" which is alright with me because rest is the best healing medicine.

Melissa's counts today--

Platelets--95
Hemoglobin--9.9
White blood cells--0.2
Hematocrit--29%
Anc--to low to count

So today if not tomorrow we will hit rock bottom on counts.

Tomorrow is the big day---20 million Stem Cells will be on their way between 1-3 p.m. and 4 hours after she gets her stem cells we start the G-CSF shots. Hopefully this will fix all of our ailments and send us on the road to recovery--and most of all out of here someday.

KEEP PRAYING IT WORKS!

Til next time--Love
Jeni,Doug & Melissa

Tuesday, April 8, 2003 4:27 PM CDT

Today is not what you would call a fun day in PBMT(pediatric bone marrow transplant). We have been sick most of the night/early morning and into most of the day time. They are still giving her Zofran(anti-nausea med) every four hours and have added Phenergan(another anti-nausea med) and it is still not working all that well. Steve(doctor) was just in to check on her and wants to try Adavan(another anti-nausea med)which will make her very sleepy. Which I would rather have her sleepy than uncomfortable all the time.

Melissa's counts today--

Platelets--145
White count--0.8
Hemoglobin--10.2
Hematocrit--31%
Neutrophils--to low to count

Tonight they will be starting her on CVN and Lipid nutrition since today she has decided not to eat or drink anything. Only two more days till transplant hopefully she will be feeling better after that.

We had 2 vistors today from Kimball Methodist Church (friends of great grandma and grandpa) it was nice to visit and know that people who don't know you personally keep you and your family in their thoughts and prayers.

KEEP PRAYING IT IS WORKING!!!

Until next time--Love,
Jeni,Doug and Melissa

Monday, April 7, 2003 5:07 PM CDT

Well it's Monday and we have just finished our 96 straight hours of chemo and seem to be handling it better than expected. Sunday was a bad day she was very sick and slept most of the day, but at about 5:00 p.m. it was like somebody flipped a switch-she sat up in bed and wanted to go out in the hallway and play ball-she was thirsty for pop-and wanted McDonalds. So of course being cute-two-and having cancer has its advantages. Mom went to play ball and Dad went to McDonalds. She had a really good night(no puking). So far for Monday she has had a good appetite no CVN or Lipids yet. If we could get back into the napping routine everyone would be happier(especially mommy & daddy). Our blood counts haven't dropped yet but they will be soon--- todays counts are--WBC 1.9,HGB 9.9,PLATELETTS 205, ANC 1841.
I hope to be able to keep up on this journal on a daily basis. TAKE CARE AND KEEP UP THE PRAYERS.

LOVE--
Jeni & Doug

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