Null…and Void often

Good neighbor and donut fairy

2006-11-21T14:23:00.001-08:00

Sorry to take so long between updates, just consider no news is good news. Tatum had her third round of gamma and her body responded just fine. It's infused in about 3 hours and we're out of there. We have the ok to have a nurse come to our home to administer the gamma, but we're not sure we want to do that. We are not guaranteed a pediatric nurse and we have found a system that works for us at the hospital.
Tatum's eyes are better, also. We switched her to a topical steroid and it seems to work.

Please pray for our next door neighbor, Linda. Her husband and our donut fairy died yesterday. It was sudden and is shocking to us all. His health was worse than we all thought and after being admitted to the hospital last Thursday, he passed. We are so sad and Tatum and Hannah lost a friend and adopted grandpa. He was our donut fairy who visited every Sunday and left our favorites hanging in a bag on our back door. He did this EVERY Sunday since Tatum got out of the hospital. He was a loving spirit who did fundraising for Children's hospital after Tatum got sick. He checked up on us daily and was the epitomy of what a good neighbor should be.
We loved Bill and will miss him so much.

David is working on a new website for updating Tatum's health and our family. It has many pictures and will be much more current. I'll post a link as soon as it's up and running in the next day or two.
Thanks so much for all who care about our well being.

Happy Thanksgiving and God bless...

Good doc

2006-10-24T18:35:00.000-07:00

We saw Tatum's GI doctor yesterday. We had not seen Dr. Mittal since July, which was weird and the longest she has gone without a checkup. Things are looking great and he took Tatum off her steroid! Tatum is thrilled, as it messed with her stomach. We are hopeful her body will respond well. Her body now will make its own, hopefully without affecting the liver. Her liver function numbers have been rock-solid since April and we are prayerful that will continue, too! Her next checkup is in 6 months; assuming labs continue to go well. She'll continue labs once a month, assuming her numbers are good.

We met two kids yesterday at the clinic; one had his liver transplant 11 years ago and the other 15 years ago. It is so wonderful and reassuring to see that. They were only there for their annual checkups. That's what we're working up to.

I don't know that I'll ever consider Tatum "out of the woods", but she can finally see the forest in spite of the trees. (There's your cliché for the day).

Tatum's next gamma infusion is Monday, Nov. 6 and we meet with the ophthalmologist again Nov. 3. We'll decide what action, if any to take with her eyes.

Thank you always for your continued support and love.

good labs

2006-10-14T05:50:00.000-07:00

We heard back from the hospital late last night and Tatum's lab work from Thursday is relatively good. Her liver functions and Fk (level of suppression) is great (knock on wood, everyone!) but her ANC (absolute neutrophil count) is stable but still lower than
normal.
She will continue getting IVIG (gamma) until the spring most likely and in the mean time, we'll continue to be overly cautious and she'll wear a mask to school and to church.
With flu season knocking at the door, Tatum needs to be more careful than ever. She will get a flu shot. In fact, the whole family will. Children's always gives transplant patients their shots first, but they got a grant to give entire families of transplant recipients a shot, too.
Please keep Tatum in your prayers for protection against the flu.

Thank you all for your comments and for continuing to carry us through all this. Life is good.

Good Saturday

2006-10-09T05:40:00.000-07:00

Make-A-Wish invited Tatum and family to have breakfast with Cinderella at the Stonebriar Westin Saturday AM. The girls had a ball (pun intended) and walked away with lots of goodies and made new friends. It really amazes me how large and quickly our transplant community is growing. It is truly a blessing to be a part of the Make-A-Wish family as well. Ever since Tatum's wish was granted, they have involved us with all sorts of events. Tatum got to speak in front of a couple hundred golfers last monday. Service King raises money for MAW with a golf tournamnet and Tatum got to tell how MAW made her dream come true. Several grown men were tearing up and apparently more money was given after she spoke. I am so proud of Tatum.
After dining with Cindrella, we came back to reality and met up with 'Liver Families'. This is an international organization supporting families with children who have had liver transplants, or who are listed to have a transplant. We met at Fuddruckers in Irving and had a great time. It's always nice to compare notes with other families and watch these kids thrive.

Tatum had her second gamma-globulin treatment this past thursday and all went well. She will have lab work done this thursday to check her kidney functions and make sure she is ok in that department. Like i've mentioned before, gamma is a protein and hard on the kidneys. Her immunologist has seen one of her patients go into kidney failure, but recovered before needing transplant. We're staying directly on top of it before it gets that far, and basically pouring water down Tatum's throat to keep her well hydrated! She did great getting her iv; her anxiety level is certainly not anything like it was 19 months ago. Can't believe it's been 19 months since her transplant.
Please keep our donor family in your prayers and thank you for keeping Tatum there as well.
I'll update after results from labs come in; probably thursday evening.
God bless...

Gamma #2

2006-10-04T13:26:00.000-07:00

Tatum goes for round #2 gamma-globulin treatment tomorrow at 9:30 in the morning. Hopefully, it will go even quicker since her body responded so well the first time.
She is naturally nervous about getting an iv, but she has certainly come a long way!

We have an actual name for her eye condition, finally. It's chalazion. Basically multiple styes and a plastic surgeon will remove them sometime in January. That's the first they could fit her in. Tatum's transplant doc is trying to expedite the procedure as she is at risk for infection. She is not nervous about that one yet. I'm sure she will be more as it approaches, but she said, "oh i've had much more serious surgery...i can handle that!" Little miss positive.

Thank you for your prayers and thoughts. We are grateful everyday.

Lab Results

2006-09-18T08:47:00.000-07:00

Tatum's labs from Thursday shows her kidneys are doing well and her liver numbers are great! As far as the transplant team is concerned, she can remain doing labs every 4 weeks! That's a record so far. In the past 18 months she has done labs every other day, every week, every two weeks and now she can go once every four weeks. Don't think for a second she takes that for granted, either.
She will have her next gamma treatment October 5 and they'll just draw labs from her iv so she'll only have to get stuck once. We're grateful for the small stuff.

Her eyes are having difficulty healing from all the infected hair follicles so we'll see the ophthamologist in a couple weeks.

Her attitude is still great, most of the time.

Gamma Update

2006-09-10T20:11:00.000-07:00

Tatum had her first round of gamma globulin Thursday and all was relatively smooth. Getting and removing an iv is always the number one source of her anxiety, so we went well prepared. She has her method down and the nurses were good to follow her orders. This was probably the smoothest one yet.

The gamma will give Tatum some much needed antibodies for fighting germs and she'll have this treatment every four weeks until the spring. Her body responded so well (blood pressure good and all) and she thought this was the easiest procedure yet. I cannot say enough wonderful things about the Immunology team and the nurses who do special procedures. We thank God everyday for those up at Children's.

Tatum's eyes are better, as well. They are taking quite a long time to heal, but they are indeed healing.

The latest recipient waiting list follows:
National
Kidney - 67,417
Liver - 17,150
Lung - 2,923
Heart - 2,870
Kidney/Pancreas - 2,441
Pancreas - 1,747
Intestine - 231
Heart/Lung - 155
Total - 92,269
Texas
Kidney - 4,706
Liver - 1,396
Heart - 340
Lung - 162
Kidney/Pancreas - 122
Pancreas - 82
Heart/Lung - 7
Intestine - 2
Total - 6,650

17 people die every day waiting for organ transplants. There are only 7,000 viable donors/year. I urge you all to talk to your loved ones about donating your organs when you die. One person can save or make a better life for up to 50 people! That's too great to ignore.
There is a growing community of wonderful transplant recipients and donor families and we are blessed to be a part of it.
Thank you all so much for your continued support and love.

Tatum's first gamma treatment

2006-09-06T19:35:00.000-07:00

Tatum will have her first IV gamma-globulin treatment tomorrow morning (thursday @ 11 AM). With each treatment, she will have a good 3 weeks of antibody action! They actually take antibodies from several samples of blood and pool together a good mix and then give it to Tatum. I find the whole process fascinating.
Tatum has not had an IV in a while and it's always the #1 source of anxiety for her. Please pray for the best possible outcome!
It should take anywhere from 2-4 hours, so realistically we'll prepare for 6. She can read and eat and watch movies and do homework while she receives it, so it sounds like a relative breeze.

Her eyes are looking so much better and she feels so well. Thanks always for all your support.

more pics...

2006-08-28T17:31:00.000-07:00

Tatum's hit and run in to home...so fun!

I failed to mention previously that former Mayor Ron Kirk's brother died while waiting for a liver transplant. Yet another story of too little too late. There just shouldn't be a waiting list for organs. There are too many viable organs being burried daily. I know it's a difficult decision to donate your loved one's organs when you're in the throws of trying to deal with their death. That is why we all need to make our wishes known now.

12th Annual Texas Rangers Organ Donor Game!

2006-08-28T13:53:00.000-07:00

Saturday, Tatum played softball with fellow transplant recipients. It was the Southwest Transplant Alliance 12th annual Texas Ranger Organ Donor game!!! The transplant recipients vs local media. Former Mayor Ron Kirk was the umpire.
Tatum made a "homerun" and we saw the Rangers play afterward. The game between the local media and recipients was played on the Youth field next to the Ballpark. In spite of the extreme heat, we all had a great time. Tatum seemed completely in her element.
Tatum's health is good. She started her third week of school and is doing well.
We will begin her gamma globulin IV treatments next month and do them once a month until the spring. That should boost b-lymphocytes and make her less vulnerable to germs.

We are blessed to take part in activities like this softball game. We are always mindful of our selfless donor family and the multitude people waiting and dying for organs. I urge you to talk to your family and friends about your wishes for your organs when you die. You can save eight lives and make better lives for up to 50 people when you choose to donate. You can find out more information about organ donation at www.organ.org or www.donatelife.org

God bless you all and thank you for keeping up with Tatum's progress.

Tatum's first day of 3rd grade

2006-08-14T10:54:00.000-07:00

We prayerfully and happily took Tatum to school this morning. She was so excited and nervous and a little reluctant because of her current eye situation. After she had her IV solumedrol treatment (steroid treatment for rejection back in February) her hair began to fall out. Her eyelashes also fell out and as they are now growing back, her hair follicles are infected and horrible red bumps have appeared. Naturally, they look worse TODAY than they have! She cried a little while getting ready because they look so awful. She collected herself and managed to eat a good breakfast and walk in her classroom with her head held high and her mask on snugly.
God bless all our children as they start a new school year and keep them protected!
Onward Christian soldiers...

2006-08-10T09:22:00.000-07:00

Tatum is doing well. We met with the immunologist Monday and felt assured she is an asset to our team of -ologists. She has lots of experience with transplant patients and even more experience with the drug rituximab. She has seen many cases where rituximab treatments (the IV drug Tatum received for lymphoma treatment in Feb) inhibit B-cell growth. It can take the body up to a year to cycle through and begin making b-cells again; therefore, making Tatum extremely vulnerable to germs.

Our next plan of action is to treat Tatum on a monthly basis with IV gamma globulin. If she remains healthy and all is well, a nurse will come to the house to administer. This is a protein and can potentially be very hard on Tatum's kidneys, so the balancing act continues. We'll keep a close eye on kidney functions during treatments, needless to say.

She feels great and is anxious to start school. She got the 'ok' to do that with mask on, of course. She will begin 3rd grade Monday. This all began while she was in the first grade, so to see her already going to 3rd is a bit of a shock!

Thank you all for your continued prayers and your encouragement.

Hannah, Trout-Slayer

2006-07-30T09:32:00.000-07:00

Hannah loves to catch and eat fresh rainbow trout. Don't we all?
David didn't even put a weight on this line. He threw on some powerbait and made Hannah feel like she was fishing. She was.

2006-07-29T08:53:00.000-07:00

Colorado was wonderfully cool and rainy at times and we had a very relaxing time. Tatum was thrilled she got to go horseback riding twice and Hannah caught 3 of the biggest trout on her Barbie fishing pole. We did a lot of 4-wheeling, fishing and hanging out with one another. The perfect vacation as far as I'm concerned.
We did not have to go in for labs while we were there and Tatum was so glad about that. She felt good the whole time and no one was sick.

Tatum does have a strange infection going on with her eyes. She has bumps on them that look like a sty. The doc thinks it's a slow-growing infection and Children's is setting an appt. with an ophthimologist. They think it will just take an oral steroid or antibiotic to help, but we have to be careful because certain antibiotics react differently with her Prograf.
We meet with an immunologist Aug. 7 to try and figure out the whole low wbc count. Her count is still not normal, but it's currently not dangerously low. Normal is between 5,000-10,000 and Tatum is about 4.6 (thousand).

I think we've just about added every "ologist" to our medical team. The more the merrier!!!

We're now just trying to get ready for school. Hannah will go tuesday and thursday to Arapaho Road Baptist and is so excited to get back in school and Tatum will start 3rd grade, God willing.
She is equally excited about school.

I'll report back after we meet with her next doc.
Thank you all for your ongoing prayers. We are so grateful.

2006-07-27T06:24:00.000-07:00

The Null family at Clear Lake (between silverton and Ouray)...Good times!

Colorado or Bust

2006-07-06T08:00:00.000-07:00

We got the final 'OK' from Tatum's hematologist to go to Colorado for our family vacation! My parents are there now and we will meet up with them and my sister's family for two weeks of heaven. I know that's a long time but we have done this every summer since Tatum was born. We consider this a priority and an investment. We work 50 weeks of the year preparing for it; it southes the soul. We leave tomorrow early.
Tatum may or may not go in for labs at the local hospital while we're there but Dr. Cox said she is not mandating it. Based on Tatum's labs yesterday she was going to move her to labs every two weeks, instead of weekly. We'll meet with an immunologist when we return. He wants to evaluate Tatum and get to the cause of her low B-cell count. She is essentially not making enough B-cells and those are the cells that make and store fighting wbc. It's the T-cells that do the fighting. Those seem to be right on, just not enough.
We welcome more doctors on the "team". The more expertise and opinions, the better!

Tatum's liver numbers are good and her wbc count seems to be on a wave trend. It goes up to the low side of normal and back down. She is just low of normal right now, but still up from last week's labs. So, we'll take any and all precautions and carry on.

We are praying for safety and God's will.
Love to all...

2006-07-04T07:35:00.000-07:00

Tatum had an emotional breakthrough the other night. She was upset and sat down with David and me and told us how frustrated, scared, angry and confused she is. This all stems from flashbacks of her liver transplant trauma. We were talking her through and David asked her what is her scariest memory? She responded with what happens to be our happiest memory; the moment she woke up for the first time! She said she remebers trying to breathe(she was on the respirator) and saw the multitude wires and IV's and was so scared and confused she just wanted to run out of there.
I remember an overwhelming joy and relief. By the look of confusion and terror on her face, I knew it was "Tatum" behind those eyes. I also remember immediately getting in her face to explain where she was and that we were all there with her. I told her not to try to breathe because a machine was doing it for her. She would focus on me and then look around the room and tears would stream from her face. She had never been in a hospital, except during her own birth and she doesn't so much remember that!
I know this haunts her and probably always will. It is such an intense scenario for such a sheltered little girl. She is talking so much more about her feelings involving all this.
She asked if there was anything David and I weren't telling her about her own health (I thought that was quite the mature question) and we assured her we were not keeping anything from her. Quite the opposite. We have worried a little that she may know too much, but we have always believed that she must be aware and proactive with her own health and surroundings. There may be times she is her only advocate around and we want her equiped for that. She told us she always wants to know what's going on. We'll just cross bridges as we come to them.

Looking For Trends

2006-06-27T08:13:00.000-07:00

Tatum's labs from the last two weeks are just low of normal. We're looking for some sort of trend and I'm sure she'll have to do weekly labs for some time now. She has a great attitude about it; even with her veins developing scar tissue. It's a bit difficult sometimes to draw blood. She's got great veins, but weekly labs tend to take a toll on her.
We go again Thursday and we'll see what's going on there. She feels and looks so well. Tatum's energy level is wonderful and we can't keep her out of the pool.

One of our friends (a fellow liver transplant recipient) is back in the hospital with an unexplained fever. His name is Keith Gaisford. Please keep this sweet and tough 4-year old in your prayers. He's a candidate for another liver and has been listed but this fever has them a bit worried.
Thanks so much partners in prayer!

2006-06-07T08:30:00.000-07:00

We did labs Monday and they are better! Not normal, but better. We met
with Dr. Mittal because Tatum has an issue with her eyes and we're not sure
what's going on there, but they seem a bit better today. He was optimistic
about her count and not nearly as concerned as before.
We meet with a hematologist Thursday to try and figure out the cause of Tatum's wbc plunge.
We'll do labs again and expect to see even more improvement.
I'll update after we meet with hematology.
Thank you all so much for your
support.

Tatum is out hitting golfballs with her Granddaddy. She got a new set of left-handed clubs and has decided golf is her sport of choice. No arguments from David, Granddaddy or Grandpa!

Double-Sided Coin

2006-06-02T11:13:00.001-07:00

Well, there are two sides to every coin and with the good news of the CT and liver functions, comes not so good news about her white blood cell count. It is dangerously low. It should lie between 5000-15000 and Tatum is about 2000. She is very susceptible to illness right now.
We went for another set of labs and complete blood count this morning. They are going to count this one manually to make sure there was no error with the machine.
They are not seeing many new cells forming which would indicate she is not making new wbc. Her red blood cell count is great and so are all other numbers.

She is still feeling well, but knows the start of the summer and good mood may be altered by a possible hospital stay. They are talking about admitting her if they think it's necessary.
ugh.
We should have results later today, hopefully. I'll post as soon as we hear anything.
Thank you for your prayers and we're asking for new wbc growth!
God bless you all.

Double-Sided Coin

2006-06-02T11:13:00.000-07:00

Good CT

2006-06-01T08:28:00.000-07:00

Good news! Tatum's CT results show everything is relatively normal. No new growths and really no major changes from the last CT. Woo-Hoo!
We went for labs yesterday but still have not heard back on those. I'm going to assume all is well.
Thank you always for your prayers and for your focus on her latest CT. We're all a bit more relaxed at the start of this summer, as compared to a year ago. Tatum is feeling great, eating great and we're beginning to see a bit of normal around here.

God bless you and have a wonderful weekend.

2006-05-22T18:36:00.000-07:00

Tatum is scheduled for a CT scan tomorrow (Tuesday, 23rd) around noon. This is to verify there are no new growths and anything there before is now gone. We are going a little early to let her start to drink the barium because that takes a couple hours. She will have an IV to inject dye into her. She is anxious about that. She broke down during dinner tonight and said she was scared thinking about all that's happened and what might happen. She knows all too well that one procedure can lead to many.
Once radiology gets the IV in, the CT should be a very quick procedure and then we can go home. In a perfect world, anyway.
Please keep Tatum in your prayers that all go smoothly and the results of the CT are clear.

We'll update as we get results.

Blue Angels

2006-05-18T21:04:00.000-07:00

Tatum and family were invited last Friday by the Make-A-Wish Foundation to Carswell AirForce Base to see the Blue Angels before their big show Saturday. The pilots were so generous with their time and so compassionate toward all the kids. It was a great experience and Tatum and Hannah both loved the show. It was so impressive!

Tatum is doing well. She is on the least amount of meds since her transplant. A CT scan is scheduled for tuesday, May 23. Not sure what time yet. This will be a full body scan to make sure she is healing like we think she is. We are asking for continued prayers for Tatum. Specifically, that her body accept this liver as its own and no new lymphoma. Thank you all for your continued support and love!

Blessed Mother's Day

2006-05-15T21:47:00.000-07:00

Even though Mother's Day is just another Hallmark holiday, I imagine it's a day with a whole new meaning for the mother of Tatum's donor. I think of her every day and pray she is experiencing joy and peace.
I believe in my heart Tatum will live a healthy life with a new liver that was nurtured just for her.
Happy belated Mother's day to all mothers, but especially to my mom, Bette, Sheryl and our donor mom; the most important moms in my life.

Tatum had labs this morning and I am thrilled to report that's 6 consecutive weeks of good labs and good health. Praises!!!
I am the luckiest mom in the world.

Good labs!

2006-05-03T07:34:00.000-07:00

Tatum is doing so well. We went for labs yesterday morning and got a call yesterday afternoon that ALL looks great! That's four weeks in a row and Ibelieve it's a record over this last year for her. After I got the phone call I told Tatum and she gave me a high-five and said, "Good liver!"

It has been such a blessing to breathe easy. We thank God for our donor child and donor family and think about them every day. Please keep them and other donor families in your prayers. They are the heros in all this and are, I'm sure still trying to come to grips with the loss of their loved ones. What a beautiful thing to bring life out of death. I have the latest stats from the Southwest Transplant Alliance and they are:

AS OF MAY 1

National
Kidney - 66,432
Liver - 17, 234
Lung - 3,068
Heart - 3,027
Kidney/Pancreas - 2,493
Pancreas - 1,748
Intestine - 208
Heart/Lung - 144
Total - 91,637
Texas
Kidney - 4,552
Liver - 1,322
Heart - 354
Lung - 166
Kidney/Pancreas - 120
Pancreas - 76
Heart/Lung - 6
Intestine - 1
Total - 6,441

Did you know 17 people die every day because the organ they so desperately need didn't come in time? On the flip side, approximately 70 transplants occur daily; that's over 25,000 a year! Please talk with your loved ones about your wishes to donate your organs.

God bless you thank you for the love you show us and the prayers offered on Tatum's behalf.

Still good...

2006-04-24T20:08:00.000-07:00

Tatum's labs from this morning are good and that's three weeks in a row!
Praises!!! We are waiting to hear when the CT is scheduled. They still are
not in a hurry and we don't see any reason to be either, right now.

Tatum and David had a wonderful time camping and Tatum felt great the whole
time. The weather was perfect. I'll attach a picture tomorrow; just wanted to spread the good word!
Thank you all for your prayers.

Gone Camping...

2006-04-22T05:52:00.000-07:00

We're breathing a bit easier after seeing Tatum's doctor yesterday. Unlike the lump that she found under her arm, her doctor was not in a hurry to see what this is. He actually suspects it's a breast bud. Poor Tatum will never experience puberty or any bodily change in private like the majority of us get to do. She will always be scrutinized. She doesn't seem to mind, yet!

It's not certain that's all it is so they will still run a CT sometime next week, not Monday. Unless she is admitted it's difficult to pick when you want to have a procedure done. The fact that they aren't in a hurry to check this out helps us all breathe a little easier for now. We are prepared for bad news, but expecting good news!

She and David are camping and loving every minute with this wonderful weather!

Thank you for your prayers. It's always remarkable to see how they are answered.

Wary, weary and a bit fed up!

2006-04-20T17:10:00.000-07:00

Well...Tatum found a lump under her left breast today. Sigh.

We are taking her to the doctor Friday morning and a CT scan is scheduled for Monday. We were insistent they wait until Monday so she and David can go camping. Tatum feels wonderful otherwise. I can speak for us all when I say we are SO not ready for Tatum to go back in the hospital. She understands what is at stake and it's necessary for the CT to be done. She also understands what can come from results of a CT and this last 35-day stay in the hospital has us all a little wary.

We're asking for prayers on her behalf that this is something innocent and easy. We know now ANYTHING can happen!
Thank you all and we'll update Monday after we know more.

Donor Awareness

2006-04-19T14:05:00.000-07:00

April is National Donor Awareness Month...talk to your loved ones about your wishes for your organs when you no longer need them. It is not enough to sign a donor card, although that is a good start! Your family can choose to ignore your signed card, but if they are aware of your wishes to donate your organs it can take the burden off your family making that difficult but selfless decision.
Tatum is here today because of one wonderful three-year old child and his/her family's selfless choice to let others live.
There are too many waiting for organs and there are so many organs being burried in the ground. Did you know one person's donated organs can save and better the lives of 50 people? You may not be aware of the numbers of people waiting for organs. Here's the latest:

AS OF MARCH 31

National
Kidney - 65,917
Liver - 17, 249
Lung - 3,092
Heart - 3,008
Kidney/Pancreas - 2,505
Pancreas - 1,748
Intestine - 191
Heart/Lung - 149
Total - 91,214
Texas
Kidney - 4,552
Liver - 1,322
Heart - 354
Lung - 166
Kidney/Pancreas - 120
Pancreas - 76
Heart/Lung - 6
Intestine - 1
Total - 6,441

More Good News!

2006-04-18T07:46:00.000-07:00

We heard from Tatum's transplant coordinator and her labs from yesterday were good. That's two weeks in a row. One more week of good labs and it's considered a trend. We like good trends!
She is on the least amount of medincine she has been on since the transplant, so that leaves the transplant team scratching their heads as to why she is losing so much hair. They believe the steroid is the culprit but she is only taking 2mg/day. That's not much. She used to take 40mg/day with just some minimal swelling. Tatum will probably prove to always be the unexplainable in many situations. That's my little drama-queen.

Because of her good labs, Tatum and David get to join their Quawpaw tribe on the Indian Princess campout this weekend. They are both so excited. Hannah and I will do our own thing this weekend. Not sure what, yet.

Easter was wonderful as it has renewed meaning for us. We personally understand a rebirth and rising from the dead. We are so grateful to celebrate this together.
We are ever mindful of our wonderful donor family (still don't know anything about them and that's ok) but are eternally grateful and will thank God for them every day. I pray they are able to experience peace and joy and that the years to come will bring added healing. My heart aches for them.

Many prayer warriors read this and I thank you. I want to ask you please to include a family friend who was recently diagnosed with cancer. His name is Jeff Johnson and the Null family has known his family since 1964. They were so proactive about spreading prayers all over Florida for Tatum and I certainly want to reciprocate.
Thank you all and have a wonderful week!

Good Liver!

2006-04-11T06:07:00.000-07:00

Tatum and Hannah at Rainforest Cafe for Hannah's 4th birthday.

We heard from Tatum's transplant coordinator and she said her liver numbers look great! Woo-Hoo! We get to sleep well for another week. We celebrated Tatum's good liver with some much craved BBQ last night. Tatum loves BBQ sausage.

It seems as though Tatum is losing some hair. The steroid she takes makes her hair brittle and it's breaking off quite considerably. Her beautiful hair won't hold its curl and she has some visible bald spots. She doesn't seem too bothered. She said the other day, "well I won't have any bad hair days because I won't have any hair!!!" Her attitude at times just blows me away. Honestly, it probably bothers me more than Tatum that her hair is falling out. Her Uncle Jim said he would shave his head if she loses her hair. She's looking forward for that possiblity.

Here's to good liver functions, good friends and family and beautiful weather...God bless...

Normal again?

2006-04-07T05:27:00.000-07:00

Sorry for so much time between blogs. A lot of good has been going on and I think I just needed time to be a normal mom with normal children and a normal husband. HA! Who am I kidding? There is no normal around here, but just needed a break from talking about chronic illness.

We took Tatum to the doctor Monday for labs and a clinic visit. Her liver function #'s were back up and they were scheduling a biopsy for tuesday or wednesday. After the doctor checked her out and got lab results, the biopsy was canceled! Her numbers are back to almost normal and she continues to baffle her doctor. He even told her she is giving him much anxiety. Apparently she should be leveling with her numbers by now and she isn't. Big shock. Tatum seems to always hover in that small perctentage of transplant patients that are unexplainable. I am predicting she will normalize just as quickly and out of the blue as she did with her liver failure.

She looks so great and is eating well. Her energy level is wonderful. We bike ride for miles every day since she got her new bike. We can't keep her off it. She is also back to complaining when told to clean her room and over dramatizing everything. I suppose there are a lot of things back to normal around here.

Hannah had her fourth birthday March 23 and we did it up big. Especially since we were in the hospital with Tatum last year when Hannah turned three. So many wonderful friends from church threw her a little party last year but a mother's guilt for missing her child's birthday more than helped make up for it this year. We had her party at Fairview Farms with a petting zoo and pony rides. Hannah adores all animals, bugs too. She isn't afraid of anything and wanted to pick up all the baby goats and take a pony home. She stops to pick up every rolly-polly she sees and chases geckos around until she gets one. It freaks Tatum out and Hannah thrives on that. Our little nature girl.

Tatum has been back in school and loving every minute of it. I don't think she'll ever take for granted her education. She misses school so much when she is unable to go and soaks up all she can when she is there. The attention and love she is shown at her wonderful school is healing for her. I can't say enough wonderful things about John Feekin (her Principal) and Angie Butler (her teacher) and everyone else at Big Srings Elementary. They have supported us all through this in such unexpected and powerful ways. We thank God every day for them all.

Tatum has labs Monday and we're hopeful it's more good news. We need consistent time out of the hospital. I'll certainly post results of labs when we get them.
Thank you always for your prayers and all you do on behalf of my family.

Tatum at Give Kids the World ~ Jan '06

2006-03-14T20:25:00.000-08:00

Home and doing well!

2006-03-14T20:12:00.000-08:00

We're home and totally exhausted. Tatum had a sonogram and biopsy yesterday and it made for one very long day. Her sono looked good and everything is flowing as it should. The biopsy did show mild rejection but that's pretty much what we expected. We are treating it slowly but surely. We will increase her tacrolimus to slightly supress her immune system more. We must go very slowly so her body will continue fighting EBV.
She will have another CT scan in a couple months or sooner if any symptoms arise. I'm counting on no new symptoms...

Tatum has been given the OK to go back to school Monday! She is very excited and a little apprehensive all at the same time. She has found her comfort zones at home and in the hospital, strangely enough.
She continues to eat well and is very active. She got a new mountain bike for her one-year post transplant anniversary and LOVES riding. She is really building strength and seems to be dealing better emotionally.

Thank you all for your prayers. You all mean so much to us.

back to the hospital we go!

2006-03-12T07:17:00.000-08:00

Tatum is being admitted to Children's today. She spent her one-year post transplant
anniversary throwing up for hours! Bad timing, if you ask me.

They want to go ahead and do a sonogram today (checking for flow) and biopsy tomorrow
(checking for rejection). Her spirits are low but she is going willingly.

I'll keep you updated and thank you always for your prayers.

CT Scan tomorrow

2006-03-07T08:37:00.000-08:00

Tatum will have a CT scan all over tomorrow. She has decided she WANTS an NG tube to get the contrast in instead of having to drink it all. Talk is cheap, though and Tatum has been known to change her mind at the last minute...many times!
She knows what to expect and does not seem too anxious about it.

We won't know results for a couple days, at least. The doctors want to go over it with the Radiologist before giving Tatum the ok to go back to school. She is ready!

Thank you all for your continued prayers. Tatum is feeling well and is overwhelmed, once again by all the wonderful support.

2006-03-02T11:20:00.000-08:00

Tatum is doing well. We took her to the doctor for labs and a check up Monday and her liver #'s continue to spiral downward toward normal. She came home with a nasty cough (picked something up at the hospital) so they did a chest x-ray and all was clear.

We talked with the entire transplant team and we all agree it is much easier to deal with rejection than PTLD. We will keep her on low doses of Prograf (anti rejection) and she is only on 4mg of steroid a day, compared to the 40mg of steroid she came home on. That will allow her body to help fight the EBV as it festers inside. Although rejection is easier to deal with, it isn't easy by any stretch of the word.
She is scheduled for another CT scan on Wednesday the 8th to make sure nothing new is forming and all is well.
She is ready to get back to school but don't yet have the doctor's ok.
Thank you over and over for your encouragement and prayers. We are so blessed!

Tatum is HOME!!!

2006-02-24T08:09:00.000-08:00

Tatum was discharged around 10PM Thursday night after Dr. Rodriguez saw NO evidence of ulcers and no new issues. She received her last treatment and did very well (blood pressure). It takes about 5 hours to administer.

Tatum got to come home with no NG tube and no PICC line; two things we were prepared to maintain at home. There was no evidence she would need a fifth treatment so they saw no more need for a PICC. Tatum is actually looking forward to her usual "butterfly" needle while doing labs just as long as she can be free of IV's for a little while.

She will go for labs next week to keep a close eye on liver function #'s and is scheduled for a CT in a couple weeks to make sure there is no new growth and everything that is supposed to shrink did shrink.
Tatum's weight is maintaining since the steroids help give her quite the appetite and such energy.
We can't thank you all enough for helping make Tatum's stay in the hospital bearable. Thank you for your continued prayers and support and encouragement.
God bless...

Week 5

2006-02-21T07:30:00.000-08:00

No changes and no results from the CT as of yet. We should hear something later today or tomorrow and the transplant team is discussing tomorrow plans for Tatum. This is all based on CT results, but we're staying optimistic and Hopeful!
Tatum has better energy and appetite than I've seen in the last 3 months. Steroids are working and helping her gain much needed weight. She is now up to 46 pounds!

Thank you for your continued prayers and love! We live in a constant state of tired but hanging in.
God bless...

2006-02-19T15:42:00.000-08:00

Tatum will have a CT scan tomorrow @ 10 AM. They will look at her chest and abdomen to make sure no new lumps have formed and that the one seen previously in her chest is shrinking.
She has been eating great and climbing the walls. The steroids have kicked in!

She is having issues with itching and benedryl isn't cutting it for her.

Please pray for continued recovery and clear results. We can't thank you all enough for continuing to walk along with us.
More tomorrow.
God bless...

Good trends

2006-02-17T08:29:00.000-08:00

Tatum had a good two days. Her liver enzymes are on a downward trend; not normal but going in the right direction. Her spirits are better and she is IV free! Her PICC line is in.
She was treated with 3 nights of an intensive IV steroid while being tied to a blood pressure cuff going off every 15 minutes for 6 hours. She will now be taking her steroid orally only.

Her weight is slowly increasing as well. I guess having a bag of Crisco dumping in your veins will do the trick. We're decreasing her feeds so she can work up a good appetite by the evening.
She is still very weak and frustrated, but I can see a glimmer once again.

She has one more treatment next thursday, along with a CT scan and EGD (colonoscopy) to check on progress of meds. She isn't on the schedule yet so we don't know what days for those procedures.
Thanks and our love to all. God bless...

2006-02-15T09:00:00.000-08:00

Tatum's biopsy came back and she is on the high end of moderate rejection.
We certainly don't want her to get to severe and are treating her with a
pretty powerful steroid and getting her back on Prograf (in small doses).
They are adding another med that they used just after her transplant to get
her liver enzymes down (they are up from 600 to 1000 and need to be 0-50).
I am a little freaked out, but her doctor is not.
Her biopsies are showing a healing trend! Woo-Hoo! They'll do another CT
scan this week to check the spot in her chest and make sure it's shrinking.
The spot under her right arm where they removed the other node is healing
beautifully.
Tatum got a PICC line yesterday. I don't think she'll remember any of
yesterday because she was enjoying her Demerol induced slumber that lasted
all day and some. So far her PICC is working well. She also has two IV in
to administer different meds at the same time.
Her weight is a real concern. The doctors keep asking us if David and I
were skinny children and we just laugh. They will add lipids to her feeds to
fatten her up a bit more.
Please be in prayer for Tatum's complete healing. I've seen her spirits
lifted this week more than ever and thanks to ALL for the joined effort to
heal Tatum.
God bless...

2006-02-11T08:41:00.000-08:00

Tatum received her sixth IV yesterday evening and then her seventh IV at about 2:30 this AM. Not sure what's up with that but enough is enough. The PICC team doesn't work on Friday s or the weekend so Tatum may need more and more...Her little vessels have just had enough and the more they are used the more they resist!
Many of the meds she is receiving are so hard on her veins and on her. She is getting continual feeds now through her NG tube because she isn't eating enough by mouth to sustain her. That makes her nauseas and she usually loses some of what is pumped in. Her latest colonoscopy showed the two smaller ulcers are gone but the bigger one is bigger and uglier than before. It could be worse from the biopsies they did last week, but its about 2cm wide and deep. She is still in pain and new pains seem to pop up everywhere.
We're now waiting on blood and urine cultures because she has been running a fever. They think she may have some bacterial infection and are treating it with more IV meds.
Tatum is beyond exhausted and depressed. She will have another scope next week and they want to wait to do another PICC line when she is fully sedated during that! We insisted she be fully sedated so she doesn't go through the trauma she did with the first PICC experience.
I know you're all praying and we can't thank you enough for your continual support. We're all holding up ok. To say we're just fine would be a bold-faced lie. We are worried and heartbroken and tired and confused and everything else that comes with this package. But, we also know we will all come through this wiser and stronger than before. I almost miss the old 'ignorance is bliss' way of life.
I'm counting on having good news soon.
God bless...

Another IV!

2006-02-08T21:26:00.000-08:00

When it rains it pours, but apparently it doesn't flush! Tatum's PICC line went bad around 9:00 tonight. She is currently waiting to have stitches removed and for her emla cream to numb the spot to get her FIFTH IV.
She had an enema around 7:00 for another scope tomorrow to check progress (hopefully shrinkage) on the ulcers found. Her blood pressure was a little low and she's got fever. She did not eat or drink anything today and is having stomach pain again. She is so exhausted and wants to just give up. It's scary and so sad to see her like this.
Please continue to pray for complete healing.
Hopefully we'll know a little more tomorrow.

Exhausted

2006-02-06T20:35:00.000-08:00

Tatum got a PICC line in her left arm today and an ng tube. She has lost more weight and we need to get her beefed up a bit! They'll pump in pediasure while she sleeps. She'll wake up nice and full, but still be expected to eat breakfast; something she has not done in two days. No appetite.
Her picc will hopefully eliminate such anxiety during blood draws and medicine drips. Her IV's kept going bad and she had her fifth one last night. That was enough to send her over the edge. She is absolutely fed up with being stuck and cuffed and monitered... As long as no infection settles in her PICC then it should last throughout her treatments.
Thank you all for your continued prayers. David and I are at the point of exhaustion but are certainly hanging in!
Tatum is experiencing true depression, crying how much she hates her life and how much she wants to go home. It truly breaks my heart, but I am clinging to Mark 11:22-24 and I do believe she will be only stronger in the end of this chapter.

Journey continues...

2006-02-05T09:24:00.000-08:00

It is now confirmed that Tatum is battling Post-transplant
lymphoproliferative disorder (PTLD) as a result from the Epstein-Barr virus.
The disease is an uncontrolled proliferation of B cell lymphocytes.
(lymphoma) The transplant team has identified that elements of a malignant
process are present.
Epstein -Barr Virus is one of the most common viruses for us humans. In
transplant patients, the immunosuppressants impair T cell functions and can
allow it to become active, promoting the development of PTLD.
Immediate therapy for Tatum will be ~4 weeks in the hospital with a
cessation of her immunosuppressant/anti-rejection drug and IV drips of the
anti-CD20 monoclonal antibody rituximab and an anti-viral drug. This
therapy has induced complete remissions in patients with PTLD. This is our
first approach.
We are praying that her body does not begin to reject the liver and that her
immune system will fight the lymphoma.

Tatum is depressed and in pain. This is difficult for her considering the number of continual procedures she has to endure. Everyday she cries wanting to go home. Me, too!
Hannah is doing ok. David and I are able to alternate coming home with her. What a blessing that is.

Please pray with us.

Still waiting...

2006-01-31T11:47:00.000-08:00

Tatum was scheduled to have another colonoscopy today, but thankfully that was postponed. Her drs want to wait for some possible results today and then make a new plan of action. The transplant team meet will meet around 4 to discuss any findings and then get with us; in theory anyway.
Tatum is feeling a little better and has good energy. Enough to get bored!

Please continue prayers on Tatum's behalf. She's trying to remain strong but has her moments of absolute frustration when nothing but news of coming home will do.

Tatum admitted to Children's Medical

2006-01-29T09:09:00.000-08:00

Tatum had surgery Friday to remove a node under her arm for testing and an upper and lower EGD. They found a significant ulcer in her rectum, which is causing her fits!
She is in pain but doing well recovering. We should know some results of tests monday or tuesday.
Thank you for your prayers and I'll update Monday.

No news...much drama!

2006-01-25T08:16:00.000-08:00

Monday was a tough day. Tatum was promised no IV's because the doc told us they would be doing only picture CT. We got there to learn Tatum had to drink an impossible amount of Barium and then get rewarded with an IV in the hand because they decided to do a contrast CT. The exact opposite of what she was promised. ugh!
Considering Tatum has lost a good 12% of her body weight because of difficulty in eating, it was a nightmare for her to drink all that Barium. She threw up once and it took her about 3 hours to get it down.
We still have not gotten any news. She is tryig to build back some strength so she can go to school. She has not experienced the pains in her gut in a day or two. Small strides, but it's a little better for her.
Thank you still for your wonderful prayers. God is faithful.

I'll update as soon as we hear.

CT scan

2006-01-22T22:28:00.000-08:00

Tatum will have a CT scan Monday @ 12:30 to look at the lump under her arm, her liver, stomach, intestines and colon. She is still in quite a bit of pain and lost more weight. She is exhausted and not resting well because of discomfort.
When she feels well she is smiling and trying to make the best of it, but when the pain comes back she is really uncomfortable.
Thank you for your prayers and ask you continue on Tatum's behalf. We'll update after her scan.
God bless...

Pain, Questions and More Tests

2006-01-18T06:30:00.000-08:00

Tatum will go in for labs tomorrow and see Dr. Mittal (her GI) and Dr. Rodriguez (her other GI). She is having pretty severe but intermittent pain on her right side and in her stomach, or lower intestine. It's difficult for Tatum to describe the pain, but it's there. She has lost more weight and is back UNDER 50 lbs. Not good.
There is a small lump under her right arm that was really hurting her last week, the pain is gone now but he lump isn't. They will test for a particular virus that is a precursor to lymphoma. I don't even like to put that in writing, but it's a reality. Lymphoma is a rare, but possible side effect to one of her meds. ugh. They say if she does have this virus, it's very treatable. I'm going to hang on those words and we're trying not to think the worst, but also trying to realistically prepare for just about anything.
She just does not look good and feels even worse. She is missing school and really does not like to miss school. Stress is pretty high around here.
Last week her numbers were back to normal for the first time in months, which really makes no sense for the way she feels.
So, we're back to a drawing board and we'll start guessing, testing and revising our guessing.
Please pray for Tatum's health, physically as well as emotionally. She is so tired of feeling this way and ready to get on with things.
Thank you all and God bless you. We'll know more tomorrow so i'll post then.

Dream #1 Fulfilled!

2006-01-11T06:09:00.000-08:00

We returned late Saturday night from the most incredible week of being absolutely spoiled! Back to reality is a harsh one.
As soon as we stepped off the plane in Orlando Tatum got the royal treatment. A rep from the 'Give Kids the World' Village met us with a cute sign to greet Tatum. She walked us to our rental car and sent us on our way. It was only about a 30 minute drive from the airport to the village, where we were greeted with smiles and gifts and unbelievable scenery. This place is just wonderful and completely for the kids.
There are just too many details to go into, but I will tell you Tatum's expectations were met and more. They think of everything and gave it to us. We stayed busy every day and visited Epcot, Universal, Sea World, Animal Kingdom and Magic Kingdom. Plus, the village is filled with plenty to do; fishing, putt-putt, train rides, ice cream shop open 14 hours, nature trails on a beautiful boardwalk and on and on...
Tatum was treated like the princess she is and loved every minute of it.
We joke we'll never be able to go back now that we have tasted first class. With Tatum's 'Give Kids...' button, we were able to go to the front of every line in every park.
It was really great to not have to say, "no" to anything Tatum wanted for one week. That, in itself, was her dream come true.
It was a wonderful way to start our new year and we are so grateful to all of you who helped us get through 2005. We will continue to call on your help for this year and the future. We simply cannot do this alone.
Thank you, thank you, thank you for all the prayers and well-wishes and smiles and hugs and phone calls and cards.
We love you all.
We'll have pictures soon ( i promise :))

Disney Dreams

2005-12-31T18:57:00.000-08:00

Tatum is about to experience her "dream come true!" Through the Make-A-Wish foundation, we are leaving in the morning (sunday am) to head to Disney World for a week. Tatum will turn eight Monday and is so excited to start a new year with a whole new outlook.
We are grateful for so many things...Happy New Year and I will figure out pictures on this blog so we can share our experience.
God bless you all.

The Null Family

So Close!

2005-12-27T06:24:00.000-08:00

We are scheduled to leave Sunday morning and fly to Orlando for Tatum's Make-A-Wish trip to Disney World! Tatum is so excited and so looking forward to starting this new year out healthy and less eventful.
We'll be staying at the 'Give Kids the World Village' and they handle everything. Tatum starts every new calendar year turning another year older and will be 8 on January 2. What a great place to have your birthday party! We have much to reflect from 2005, but we'll do that in a few days.
I am asking for prayers on Tatum's behalf. Her liver numbers continue to hover in a not so normal range. Her doctor is talking about having a procedure done where they do a much longer EGD (endoscope) and go to her bile duct and check for blockage. He suspects that could be the problem. But it is just another guess since we hear over and over "medicine is an art, not always a science". That's a riskier procedure and it all makes me a little nervous.
We trust, though that God has her wrapped in protection and continues to do great things with her.
David and I pray she feels good, physically for this trip. We want so badly for her to fully enjoy her "dream".
We continue to be amazed at the number of people praying for Tatum and ask you please keep them going out on her behalf.
We do labs this week and that will be the final word if we are able to go on our trip! I guess I'm praying more about that answer and hoping it is only good news.
God bless you.

Wild-Child at Bay

2005-12-17T11:43:00.001-08:00

Tatum had her EGD (endoscope) yesterday and her ulcer is gone! Ya-hoo!
She did so well and even contained the inner wild-child. We did not give her any versed (Midazolam) before the procedure, mixed with her having little to no anxiety and that seemed to do the trick. Apparently, versed can cause them to wake up angry. She has woken up angry without the versed before but her anxiety level used to be MUCH higher. This was almost routine for her. We're so proud of her.
Her liver numbers are still higher than her doctor would like to see and this is not common after transplant. She is feeling good and they aren't high enough to cause immediate action, but we'll be keeping an eye on them for sure. There might be cause for another procedure to check for a blocked bile duct. You have one main duct that branches off into many, and when it may still be flowing it could have some blockage. That can cause damage and eventually liver failure on down the line. We want to avoid that at all costs, naturally!
Her doctor didn't see any reason why we shouldn't go on our Disney World trip (through make a wish) as scheduled. Needless to say, Tatum is so incredibly excited. She'll turn 8 at the Magic Kingdom. What could be better?
We asked her what she wanted for Christmas and she said, "i have a new liver and i'm going to Disney World...nothing!" What a sweet perspective for such a young one.

I want to thank all of you who had and continue to have the Curtin family in your prayers. For those of you who don't know, James Curtin (8-yrs old) was admitted to Children's last Friday with Sudden Acute Liver failure (perfectly healthy before, JUST like Tatum). He received a cadaveric liver Wednesday and all was good, until his ICP's kept increasing. His brain was swelling and there was nothing the doctors could do. After a CT scan and an MRI, it was confirmed no brain activity and James was pronounced dead on Thursday. This is heartbreaking for so many. His family is shocked and crushed. They, naturally were looking forward to a story much like Tatum's.
The beautiful part of James' story is he saved lives through his passing. His wonderful parents donated his organs.
God is good and will carry them through.

Merry Christmas and Happy Holidays to you all. Hug your children and count your blessings!
Thank you for your prayers and please keep them coming!
God bless you.

wild-Child at bay

2005-12-17T11:43:00.000-08:00

Media-Girl

2005-12-02T06:17:00.000-08:00

Tatum's labs from last week showed no significant differences. Her numbers were slightly elevated but we (the doctor included) all suspect it's due to a cold she has been fighting. She is feeling great and continues to have good energy levels and decent appetite. She had no labs this week but will go back next Thursday. It was nice to have a week off. Tatum loves having the week off and always dances a little happy dance when told -no labs!

A photographer and writer from the Dallas Morning News came to our house Tuesday for a story that will be out tomorrow, Saturday December 3. It's running with a story about the parade. We were given the opportunity to retell our entire experience. David and I are finally to the point where we can retell our story without going into a sobbing fit.

Remember to watch for Tatum on Ch. 8 at 10:00AM for the Neiman-Marcus/Adolphus Children's Parade www.childrensparade.com She is so excited and will be wearing a Children's sweatsuit and Santa hat. We think (not certain until we get there) she'll be on top of a convertible, as opposed to riding on a float. Keep an eye out!

Thank you always for your prayers.
God bless...

Thanksgiving

2005-11-24T16:58:00.000-08:00

We want to wish everyone a peaceful and happy Thanksgiving. Mostly, we want to thank our donor family (still anonymous) for the wonderful gift of life they gave back to Tatum. We want to honor their child's life by reminding all of you to talk with your loved ones about organ donation and what your wishes are. We pray that you all decide to donate your organs when you no longer need them, in order to save the life or make better the quality of life of someone else. This is an act of ultimate selflessness and so important to discuss this with those you love.

We are thankful for each and every person who has offered us support through acts of kindness, prayer, phone calls, visits, cards, hugs, e-mails and by reading and keeping up with Tatum's progress.
Thank you and may God bless you.
The Nulls

A Star Is Reborn!

2005-11-15T08:50:00.000-08:00

Tatum has been chosen to be one of several kiddos to represent Children's Medical Center in the Neiman-Marcus/Adolphus parade on Saturday, Dec. 3. She is so excited and told me, "you know, Mom I think I'm kind of famous now!" I love that being on center stage is helping her heal through all this. She has not yet been told if she'll be on top of a float or on a convertible corvette; either way she said she'll be happy.
She and David were able to go camping with her YMCA Indian Princess tribe this past weekend. She loved every minute of it and I was so grateful she felt like going. That is such a special time for Tatum and David and they always walk away with such great stories and memories.
We go back this Thursday for lab work. Last week she had labs but not much changed. Her numbers are still slightly elevated but not alarming. They are down from when she had her biopsy but higher than "normal". The doctor also ordered tests for hepatitis and many others so we can start to rule out any issues.
Please keep Tatum in your prayers for healing and for her numbers to find their way back to normal.
Blessings...

New Baseline...

2005-11-02T06:26:00.000-08:00

We met with a specialist with the Infectious Disease department at Children's to evaluate why Tatum is catching so many colds and dealing with so many upper respiratory issues. We really liked this doctor, as she was very thorough and knew Tatum's thick file very well. She suspects Tatum might just be dealing with some allergy issues and when your immune system is suppressed, that's not abnormal.
We now are to collect new data to determine her new baseline, as she is not physically who she was before her transplant. This is all basically a game of guess, check and revise!
Tatum is feeling well and her transplant team has given the ok to take her off two of her meds!! Woo-Hoo! One is an anti-viral and the other fights thrush. she has taken both since her transplant and if they'll probably just build up a resistance if she doesn't go ahead and quit taking them. Tatum is thrilled, as these are two of her least favorite meds. She is now only on 7 different meds a day.
Still sounds like a lot, but we celebrate what we can!
Praise God for always being by her side and walking her through all this. Also for putting people in our lives that help to make this bareable.
God bless...

Biopsy Done-Wild Child Awoke!

2005-10-21T20:22:00.000-07:00

This has been an incredibly long day; in fact, I can't believe it's still the same day. We woke @ 5:30 to leave here @ 6:30AM and registered and got to radiology for her sono @ 7. we were told to go on to labs because there was no one in radiology that could mark her (X marks the spot where the biopsy needle goes in) until 8:30. Typical of hospital time. We finally got her biopsy started @ 12:30 and it took about 30 minutes.
She woke up in recovery and we thought she would not experience the "wild child" reaction she has in the past because she was so quiet. Quiet before the storm. Whew! David and i are bruised and beaten from her thrashing so hard. This was probably the worst one yet. we're all exhausted, but we're all home together. That's what matters now.
We won't have biopsy results until monday since they didn't get it done before noon. i'm a little frustrated about that. i'm a little frustrated about a lot of things today. Tomorrow is a new day, right? Tomorrow is just an hour and a half away.
She isn't able to keep anything down right now. We're having a difficult time getting her meds down her as she just threw them up. We'll have to try again in a little while.
i'll post after we get results Monday. We're staying up late watching TV as a family and trying to stay optimistic.
Thanks to all for your prayers and your continued support. We need it now.

Biopsy on schedule

2005-10-18T15:11:00.000-07:00

The hospital called with annoying news...we must go in Thursday for a pre-surgical assessment, then be at the hospital Friday @ 7AM for a sonogram, then labs, then wait for an 11AM biopsy! That's an awful lot of wait time. Tatum can't eat or drink anything from 4:30 AM on. She knows that and is already dreading it. We told her we would not eat or drink until she could. UGH! I certainly don't ever want to be accused of being a whiner, but that's asking a lot of a seven year old.
And knowing the hospital like i do, things are sure to run a little behind. Let's hope not for Tatum's sake.
So, i continue to ask for prayers that her liver is not rejected and that her hospital experience go smoothly (and on time!).

More later...

Possible Biopsy, AGAIN!

2005-10-17T11:50:00.000-07:00

We just heard back from the hospital after Tatum's labs this morning and the news is not so great. Her enzyme numbers continue to elevate, even though her cold symptoms have gotten better. Her numbers should be on the decline since her symptoms are, but that's not the case. She has a wonderful doctor (Dr. Mittal) who stays carefully on top of things and wants to go ahead and schedule a sonogram and then biopsy. The sonogram will check for blood flow through the ducts and if all is well there, will continue on with a biopsy to check for any rejection.
If there is no rejection we should be home the same day. If there are any signs of rejection, she will be admitted to the hospital for IV steroid treatment. That takes about 3 days and is slow going. Typically kids respond to the IV steroid with high blood pressure and heart rate. Tatum continues to prove she is not typical and responds with dangerously low blood pressure and heart rate. We know this from her last bout with rejection. Her heart rate was so slow, it was if it would just stop. They cut the steroid time in half and watch carefully as it is being administered. They do this while she sleeps. Therefore, we do not sleep. I don't think I would anyhow!
We are continuing to ask for your prayers; that she experiences no rejection and that our hospital experience goes as smoothly as possible. We love so many of the doctor's and nurses up at Children's, but the hospital is always a trying time for us all. Please also pray for Hannah. She experiences her own stress through this all.
Thank you all so much. We are so blessed to have such a Family!

More Progress

2005-09-29T07:48:00.000-07:00

Tatum is continuing to do so well. Her lab work from Monday came back good and we are so grateful! Her liver #'s are on a downward trend and getting back to normal, just not quick enough to take her off any medicine. She'll go back for labs Monday so we can keep a close eye on her. If all is well, she'll go to labs once every two weeks and eventually once a month. Once a month make me and David a little nervous, but she is gaining the weight she needed to and continues to show her strength daily!
Thank you all for your continued support and prayer. It's a gift to be surrounded by so much love.
I realize this is one pathetic blog and am currently working to improve it and add pictures.
More monday.

Tatum's progress

2005-09-21T13:22:00.000-07:00

Tatum continues to do a little better every day. This last month was a little trying with a biopsy and endoscope; both of which required her being put under. She is classified as a "wild-child" when she comes out of anesthesia. It's very interesting, to say the least. She is a thrasher, kicker, biter and yeller. If she knew them, she would be a curser! We can laugh about it now and she does remember trying to bite me, but it's so stressful during the moment.
Her liver enzymes were continuing to elevate and we weren't sure why. She was not experiencing rejection and her newly found stomach ulcer would not be the cause. We have learned that her lab work usually indicates there is a problem before we know of the problem. she had one ugly intestinal bug that she is now recovering from.
She is back in school and loving every minute of that. We could not ask for a more supportive teacher, principal and school staff. What a gift from God.
Thank you all for your continued prayers for Tatum and for us. We need them. We feel them. As i become a little more blog savvy, i'll be posting some pictures of Tatum and Hannah and keep you all updated daily or at least weekly.
We go back for labs monday and we'll hope to come off her steroid then.