God’s Timetable & Kimbell History

10:27 5/8/2014

I’m continually reminded that life is not on my terms nor my timetable but it never seems to sink in. Maybe that is why God hits me with things that make me understand, at least temporarily, that he is in control and not me. We are frantically getting our house together, packing stuff and trying to get ready for the wish trip. My parents and Kimbell went to Houston to see Chole and Zoey and get their RV. Well they got their RV and were supposed to head out and then well mom got sick. She couldn’t get kind of sick no she gets sick and next thing I know she is in the hospital! Really you have got to be kidding me. Next thing I know I’m on a plane down to Houston to see my mom. Turns out her pancreas decided to rear its ugly head, poor mom I mean she has been through enough but now… We came up with a plan and K and I started the drive back to Fort Worth. The whole drive all I could think about was how we can all plan for this and plan for that but really in the end it is so not in our control. At the end of the day it is God’s will and on his timetable. So with that being said I think I’m going to change how I pray. We want more then anything in this world for the 23 year old woman to be healthy, the perfect match and for Kimbell to come out on our side at the end of this but what I need even more is for God to believe and want the same things as us. Despite what the future holds for us I know Kimbell will ultimately be happy and healthy but I pray that God wants her to be happy and healthy with us.

So now that I’m done with that. We leave next Thursday for the wish trip. We are supposed to find out on 5/27 if the donor cleared and is willing to donate on the days they want her to. If so then K and I will go straight from Orlando to MN and John will fly back to DFW and drive up.

Other great news, thanks to my dear friend that wanted to run a fundraiser for us… SCS is going to have a Karing for Kimbell day to raise money. I cannot convey how blessed we feel to have the support of SCS but even more everyone will know which should translate into a zillion prayers and nothing is more powerful than a prayer!

Our lives have changed so much in the last five months it is hard to wrap our hands around all of it, but as we look at each event that has happened it has been God setting us up for the next year of our lives. Thank you all for being part of our journey 🙂

Paige, John and Kimbell

K says “Yipeee I’m getting a transplant!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am very excited for my transplant!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! as you can tell. Love, Kimbell”

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Posted May 2, 2014 8:39am

Thank you thank you thank you for all the prayers and support!

Yesterday we met with the BMT team at Cook’s thanks to our amazing pediatrician who used to be an oncologist before she had her second set of twins! It went well and we found out that we will go to them for everything for at least a year post BMT. All the things we are learning!

Donor Update – So out of the 6 donors MN requested confirmation typing on only 3 set up draw dates. 2 of the 3 have been eliminated. The remaining donor is a 23 y/o woman in the US. We should have the second HLA results early next week at which time MN will submit the next round of paperwork for her to be our donor. They are requesting a draw date (where they extract the marrow) of June 23rd which puts us in MN on June 1. Earlier this week MN requested another round of donors to go for confirmation typing and other blood tests so that we have a backup donor in case something doesn’t work out with the 23 year old. Please say prayers for this gracious woman.

Things are crazy around here trying to get our house ready to leave and to come home. Plan for Kimbell’s wish trip which is in two weeks! We haven’t really done anything 🙁 We are also trying to come up with ideas for Kimbell’s room during BMT since she will be there so long. Ideas???
Also for those of you that have been through this out of town if you have any suggestions on what we need to bring with us I greatly appreciate it. One of our friend’s from school is trying to set up a couple of fundraisers before we leave! What a wonderful considerate person so those of you in the area…. 🙂 Mama’s Pizza has graciously said they will give us a portion of sales on a certain day and everyone knows they have the best pizza 🙂 Stay tuned for details!
I guess that is it for now!

Thanks and lots of love to all.

Paige, Kimbell and John

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Posted Apr 23, 2014 9:09pm

Hello,

I hope you are all doing well. We have been frantically working on our house and working with the transplant coordinators. There are a lot of them! Kimbell has multiple matches so Dr. Tolar is able tone really picky – what a huge blessing. On April 11th six donors were selected to go for confirmation typing. This blood is sent to UMN to verify that in fact they are HLA typed correctly and to find out there blood type. Typically you wouldn’t look at blood type because the recipient becomes the blood type of the donor. For some reason Dr. Tolar wants a young donor with the same blood type. The search coordinator was shocked because there was another donor who had been through the whole process but he was not the same blood type so he was ruled out. Unfortunately as of the 21st only three out of the six had responded and are scheduled for blood draws this week. We should have an update in two weeks. If all three are in fact matches and have K’s blood type one will be selected to go through the physical exam. If none of them are K’s blood type then I guess we keep searching. Please pray that one of these three are the perfect match!

As for Kimbell she is holding up ok. She was sent home with a fever last week so off to the dr we go. Apparently you can still get strep without tonsils! I asked how and the dr responded “How do you not have any neutrophils?” Fair enough :). Her neutrophils continue to go down but it appears her hgb and platelets have stabilized for now.

In true John and Paige fashion we booked a last minute disney cruise for Easter. I am continually amazed at God’s grace and blessings he blesses us with. It was truly a trip of a lifetime. We have been so stressed out and we really needed to be “unplugged”. The second night we were there K went to the kids club while John and I had an adult’s only dinner. Dinner was great but it was so nice to just be able to sit and enjoy each other’s company and laugh a lot! So much in fact the waitress, Eve, said how nice it was to see a couple laugh instead of being so formal – of course she said it more elegantly then I. The next morning we get a phone call of course we are barely awake and all we got out of it was that we were supposed to be somewhere at 3:25. So we had lunch and walked around Grand Cayman. At around three we realized we had no clue where we were supposed to be or who called us! Not good! We went to guest services asked around nada. John thought it was the third or fourth floor so I was on one and he on the other with our wave phones. At 3:30 K says I think we are supposed to be on 9 he mentioned the spa. So we ran off and no one was there. After waiting a bit John went down to the next floor and there was Victoria! We were soooo late but still completely lost. She escorts us to the captain’s and officers’ deck where they drive/navigate the boat!! Then we find out that Kimbell gets to blow the Mickey whistle! It was so awesome and priceless. All the officers were saying that Captain Fabian has never let anyone blow the Mickey whistle! What an amazing event on Easter. That night Kimbell took her residence at the pin trading table, every night she did this, with her new friend Katya. She traded all of her pins we brought (roughly 200) more than once! Kimbell got money from the Easter Bunny and promptly spent it all on mom and dad. Such a good kid with a huge heart.
On Monday we hung out in Cozumel and really didn’t do anything but chill. I seriously have my days mixed up 🙁 well on pirate night we are eating dinner and one of the officers comes by to introduce himself. Turns out that Ms. Eve told her friend Piere about Kimbell and that is how she got to go to the deck. Of course K is totally oblivious so when he walks off she says who was that? We explain it to her and she goes running off to give him a hug :). Monday evening we get back to our room and there is a bag with ribbon on it addressed to K. It was an invitation to be the honorary pin trader at the officer’ spin trading event the last night of the cruise from Katya. K was soooo excited. She also got to meet Eve and the manager of Palo who gave her a rose. Quite the royal treatment!
Yesterday we got another call to go to the first floor hmmmm wonder what is down there… All of the engineers with the machines and engines and well everything that makes the boat go. Steve, the chief engineer, showed us around and introduced us to everyone. Kimbell even got to start one of the motors! Somehow he knew K loved pins and he gave her some pins that you can’t buy! That night she stood with the officers trading pins. She even got to get her picture with stripes on ;). Then Piere came with a gift for K he gave her her two most favorite things, a Stitch – a small one so she can take him everywhere and a Stitch pin. I’m about to burst into tears at this point.
At 9:45 she went to a character meet n greet with very few families and it was awesome. Now I am in tears because I haven’t seen her so happy in so long. They treated her like a princess and gave her priceless memories that she will have with her forever. It was the only vacation where K cried because she didn’t want to leave. We will forever be indebted to the wonderful cast members aboard the Disney Wonder. Eve, Katya, Piere, Nelson and Steve thank you for making our little girl forget life and to truly enjoy it.

Unfortunately back to reality we come. We will not have a schedule to be in MN for another month. We will only get one week’s notice to be there once the donor consents. With that being said we could be there as early as June 2. Her conditioning phase (chemo) will be 12 days so a bit more then we were expecting. Insurance has approved the transplant which is huge. She will lose her hair and has decided she would rather shave her head and get a wig of her own hair prior to being admitted. She does not want to be bald in the hospital room. Kimbell was so upset and still is about spending her ninth bday in the hospital so we thought crud we better start preparing her that she will most likely be in for her 10th bday and at best be at Ronald McDonald. Her response to me “Mom, it’s ok. Who could ask for a better present then the hope and chance to be normal? It’s all I have ever wanted.” Well ok, made me feel like the kid and her the adult! Thank you God for her continued strength and positive outlook despite the challenges that have been sent her way. Her latest question is that if this works when can she donate some of her new marrow to me? It is so hard to remember she is 9 at times.

If you hung in this long wow thanks :). Please say prayers for the donor and that it comes to light quickly. John had asked if her chances go down daily to which he answered no but definitely month after month. She needs this transplant sooner than later. In the meantime we are going to enjoy every minute we have even if she just puked all over the kitchen!

Love to all,

Paige, John and Kimbell

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Posted Apr 2, 2014 11:08pm

Thank you all for the prayers.

It has been a stressful couple of weeks. The trip to MN went well and K’s marrow is about the same. We came home and she had her surgery. She spent Monday morning to Thursday night inpatient and came home on IV antibiotics. I was so excited when she went back to school on Monday after being out for more than a month! Now I just have to catch her up at school. Really we only have two weeks to catch up on because we had done the first week, well most of it, and the second week was spring break.

So what does the future hold for Miss Kimbell??? Well we had a very good conversation with her doctor in MN and we are moving forward with a bone marrow transplant. Her amazing doctor is using a customized conditioning due to her unknown disease. Unfortunately despite many friends going through this until you go through it yourself you don’t realize what a long process this is. It will take at least a month for insurance to approve potentially longer if they want to request information over and over or if they approve it one gate at a time. Then it will take 4 – 12 weeks to find the donor, testing, see if they are willing to still donate, and find out when they are willing to donate. MN will only accept bone marrow which requires sedation and a hospital stay for the donor. If the matches are international it takes longer b/c NMDP (national marrow donor program) has to contact their international partner and then they contact the donor. Obviously all donations are done out of the goodness of their hearts so we are entirely dependent upon their schedule and generosity. Two of my trusted advisors had problems with their donors. One got into a car wreck on the way to donate! And the other pulled out at the last minute! Obviously God had a plan for both of these boys because they are both doing great. Please pray that it doesn’t take this long or longer! Please pray for the donor to be the absolute best match, their health and for God to be with them on their journey.
We are hoping we will have some sort of a schedule in a month but that is probably best case scenario. Once we get our schedule we will know when we have to go to MN. It will be two weeks prior to transplant for workup and to start chemo. K will not get any radiation. If all goes well she will be inpatient for 5 weeks and we would be in MN for 115 days. K’s doctor really wants to start this in June but that is a long shot. July is more likely but it could be as late as September which wouldn’t be good because that would be the beginning of flu season and all around yuck season. We could really use everyone’s prayers that this goes well. Statistics are not on our side but we believe God is with her and pray it is his will for her to be with us.
On a positive note Kimbell’s Make A Wish trip is coming up J This couldn’t be better timing. She and John are going to be the hit of Star Wars Weekend if John doesn’t die of heat exhaustion. He is the new owner of the supreme edition Darth Vader costume, Kimbell will be sporting the hot pink version of Darth Vader, and Stitch will be the mini dog version of Darth! I can’t wait to see what people do when they see the three of them! She is getting super excited which makes us all happy. My mom is trying to make her some dresses but my poor mom she is not a seamstress and Kimbell is not the most amicable model so you can only imagine. It has taken her three weeks for one dress L but it looks good J
John is creating a new web site for Kimbell, he just started it but you can see the beginning of it www.kimbellstevenson.com
In the meantime we are packing the upstairs so we can clean the walls, paint, and put in new carpet in anticipation of Kimbell coming home after her transplant!
That’s it for now. Thank you J

Love to all,
Paige, John and Kimbell

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Posted Mar 22, 2014 12:52pm

Well we are on our way back. As always we continue to learn new things. We are blessed in so many ways. BMB went well and not as much pain as last year. We we’re even able to fly home early today to make a fundraising event for Give Kids the World.

Kimbell will be admitted to Cook’s for her surgery on Monday morning, surgery Tuesday and hope to get out Wednesday or Thursday and home on IV antibiotics through the end of the week.

As if we don’t ask enough we really need prayers right now. A year ago we didn’t have any options for Kimbell. We were given one yesterday and are to touch base in 2 weeks with our decision. Unfortunately no option is without incredible risks so please pray that God gives us answers and John and I make the right decision. Her marrow isn’t back and it may well force our hand which wouldn’t be bad because I am afraid unless everything goes perfectly there isn’t a right decision. I thank God we have an option but it is still incredibly scary.

For those of you that understand the medical part she isn’t responding to Neupogen, she stopped responding to the steroids and her lymphocytes are failing and apparently the monocytes she makes aren’t the right ones. She has high cellularity despite all of this bc most of her stem cells don’t do anything. This isn’t good bc you have to make space for the donor engraftment. She still has multiple, I think 5, 8/8 matches.

Thank you all for the love and prayers.

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Posted Mar 18, 2014 12:03am

Tomorrow we will be packing to go to MN to see Dr. Tolar. K has her bone marrow biopsy on Thursday morning and then we see Tolar on Friday morning. We are all long past praying for a good marrow, now we just pray for answers and guidance. We have a lot to talk to them about. K refuses to go back on her steroids and to be honest I’m not sure they were helping anymore so I can’t blame her. 9 these days is not an easy age and unfortunately even at a Christian school the girls are not above teasing others. I also think she is growing very tired of not being normal. At dinner the other night she said so when am I going to get a new immune system. John tried telling her she had one it just didn’t work so swell. I’m not sure she bought it! Her last hemoglobin was actually decent for her but the cell morphology was “markedly” abnormal. The cells were misshapen and had little oxygen in them so I’m not sure if it was artificially high or not. Her ANC on her shots is the lowest we have seen since starting the shots so that was a bummer. We will be asking about the possibility of starting her on epo as well as other pressing questions in attempt to make her more comfortable so she can enjoy life to its fullest 🙂

So many prayers are appreciated.

Love,

Paige, Kimbell and John

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Posted Mar 6, 2014 10:05am

Well Kimbell had her third surgery/procedure on Tuesday as they still cannot figure out where the blood is coming from. She is now scheduled for surgery on 3/25 where they will cut through to the arteries in her throat and immobilize them. From what we understand this will be an inpatient ordeal at Cook’s.

On a positive note 🙂 Kimbell saw the cardiologist yesterday and her heart is “perfect and very strong”. Wohooo 🙂 unfortunately this means that the tachycardia is being caused by her low hemoglobin. The cardiologist was very thorough and spent a lot of time going through all of her stuff before he made his decision. K was quite relieved her heart is healthy but bummed that obviously her marrow continues to decline.

We leave for MN in two weeks for her BMB and will talk to BMT at that time about either starting epo or transfusing her. Please say prayers this goes well and leads to more answers!

Next week is Spring Break! and get this we have zero plans, what a shocker! I’m not sure we will know what to do with ourselves!

Hope you are all well!

Love,
Paige, Kimbell and John

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Posted Feb 6, 2014 11:05pm

I had no idea how long it had been since I have updated!! So much has happened!!

So at the end of October we went to Disney World with a family that we met at a Make A Wish event. It was the most amazing trip ever, we went on their private jet – John, Kimbell, myself, the mom and her two sons, and then two other moms and their boys. All I can say is it was beyond my imagination. Kimbell had such a wonderful time with the boys, she barely used her wheelchair and kept up for the most part. None of the kids argued, the moms’ were amazing women and get this one of them is the wife of one of mom’s surgeons that worked on her when she was septic!! It is such a small world. God graced us with such an amazing time and hopefully new friends as well. They truly are remarkable families.

Then we went to the very first ever Epilepsy Awareness Day at Disneyland. They had special purple shirts with Mickey and teddy bears for the kids. John wasn’t able to go and I wondered if it was worth the trip. When we got there Kimbell said “Mom, mom! Look at all these people wearing purple shirts, they have seizures like me.” Kimbell and I had a great time and it was worth every penny for her to know she wasn’t alone, that there are other people out there that share some of her struggles.

So then we went to Tokyo. Kimbell has been wanting to meet Stitch’s girlfriend Angel for what seems like forever, so yes we went to Tokyo. Dragging John along the way. We ended up having a wonderful amazing trip. Kimbell met Angel and as soon as she was done she jumped up and down “I met Angel, mom I met Angel” turns out two months later I am still hearing that. Tokyo Disneyland and Disney Sea are two of the most amazing parks ever. Everything is done to perfection. Kimbell managed to lose Stitch, her popcorn bucket and her new ear muffs and get this…. all of it was turned in! That would never happen in the states. We have lost more things in Disney then I can count. If you ever go to Tokyo Disney you have to get on the popcorn bandwagon. I’m not a big popcorn person, Kimbell is, but oh my goodness it is amazing!!!! Also in every flavor you could imagine, even curry and boy could you smell it for a mile! No we did not try that one 🙂

Then… we went to South Africa for the weekend. There was a fire on the plane over the Atlantic, a drunk threw up on Kimbell, John got stuck in the bathroom in the BA lounge due to a faulty door handle!!!, our flights were canceled and hmmmm a few other mishaps but… We got to feed a raffi!! we hugged him and kissed him and it was so amazing. Kimbell and John got to play with baby lions and a baby jaguar. Then John and I got to play with the youngsters – 18 months – but are not small. John and I also got to spend time with Eddie the 11 yr old cheetah who would stop purring when you stopped petting him!!

So through all these months Kimbell has been hanging in there. It’s been a typical winter with lots of infections. We got back to MN next month for a bone marrow biopsy and an update with the transplant team. Right now the biggest struggle has been the fact that she has been coughing up blood for months now. We have ruled out the lungs, ENT has ruled out their portion (both required surgery – one of which kept K in bed for 5 days) so now they think it may be coming from her esophagus or stomach… Her pulse is also way too high so she is tachycardic most of the time. We had an EKG which was normal but BMT emailed tonight asking when her last ECHO was and CT of her lungs. So it sounds like we will have more tests and at least one more surgery coming. Kimbell is so sick of this and it is really taking its toll so please pray they figure this out.

Make A Wish – well K’s wish maker moved and some things slipped. We are so excited because Monday Kimbell gets to go to the Wishing Room at MAW to talk about her wish! Disney denied her first wish but hey kudos for her for trying and kudos to MAW for asking!!

Thank you all for your continued support, love and prayers. There is no doubt we wouldn’t be here without it.

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Posted Oct 5, 2013 10:59am

I’m finding that the longer we are on this journey the less I have to say yet the more I wonder what the right thing to do is. Today John asked me if I could choose a shorter better quality of life or a longer life which I would choose. I said the shorter life, his response was “I think Kimbell agrees with you.” Ironically that is the decision we have made since she was a baby but the older she gets the harder it gets to know we are making the right decisions. The trip is going well. She has verbalized more on this trip then she ever has. She makes me laugh as she told Dr. Tolar multiple times how much she enjoys me being on shots and how my doctor increased mine! Last night when we were laying down she asked again if she could change her wish, I said I don’t think so why? I just want to be normal mom I don’t want to be sick. If she only knew how many people want that for her….

Her bone marrow biopsy went well and she doesn’t seem to be in as much pain as last time although she definitely remembers May as she said “You got my oxy right?” We were walking through the hotel and John says “Kimbell you don’t talk about that in the middle of the hotel!!” Nothing like a 9 year old talking about a high powered narcotic walking through the Sheraton! Dr. Tolar thinks the steroids are still working although when we pressed him and told him how she has changed the last couple of months, and then Kimbell even said I’m tired all the time he decided to withhold his opinion until he looked at her marrow. Her counts on Friday slid even lower. Additionally her retic is low as well which means her marrow isn’t responding like it should – no surprise there. For those of you whose kids get transfused did they complain about headaches? I’m beginning to wonder if Kimbell’s headaches aren’t really headaches but rather she is dizzy b/c of the anemia. She also asked Dr. Tolar when she can stop her shots, he looked at her and said “Well that is the goal Kimbell”, and assured her the drugs are working. I’m not sure she was convinced but he tries so hard. So now we wait. Apparently the androgens can affect what her marrow looks like. That was news to me!

Tonight we go to Orlando!!! We are so excited and Kimbell’s costume is almost ready. I have to wait until she wakes up before I can finish it! Wake up Kimbell!! Didn’t work, she is out cold at 10 AM! She is going to be a Pink Darth Vader. I am so excited. Although I must admit when I made the outfit I failed to think of her wheelchair!! I guess she will have lots of extra padding. 🙂

Thank you all for the prayers, as the journey continues we need them more and more 🙂

Love,
Kimbell, John and Paige

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Posted Sep 13, 2013 10:12pm

I have thought about updating for weeks and well I hate being a Debbie downer. So Kimbell got out the day before her birthday just to go back on her birthday 🙁 we had to reschedule her party which was a bummer. Then the a couple of days later her best friend had an emergency appendectomy! Really that’s what we do when we get released… Go to the other children’s hospital.

Went back the next week for checkup, looks good. Praise The Lord.

Next week IVIG doctor calls. Kimbell’s hemoglobin is 8.0 she might need blood. That morning I had told John, she’s not ok her numbers are really low. I hate being right. So then they think maybe this is a lab error so we repeat at a different lab a few days later. It had gone up but not much aka we need to repeat and if she blacks out we need to go to the ER. If not repeat in two weeks. Meanwhile she can barely make it through the schooldays and many we go to lunch so she can lay down. So then my throat hurts ok great. Go to ped run strep. Two days later I call, definitely not strep she can’t stop coughing. Great now the kid has bronchitis. Really?

The million dollar question have the steroids stopped working, we don’t know. Because the infection was so bad they aren’t willing to make a call at this time. We run counts on Friday again. We go to MN for yet another bone marrow biopsy on the 4th. I don’t know what Dr. Tolar is thinking right now but I do know the local hem has mentioned epo. How many bone marrow shots can the poor kid take? We haven’t mentioned it to her.

I had a dear friend the other day ask when is enough enough? When do you pull the transplant trigger to give her a chance at life? I so wish I knew.

Next week we are going to a Make A Wish charity dinner. I am so excited I hope K can stay awake and smile….

Positive news! John started his new job. We are very blessed with this opportunity. We also put in for Kimbell’s Wish! She wants to be an Ewok at the Hoopla for Star Wars weekend at Disney World. If you don’t know what I am talking about please look up the YouTube video!

Another huge thank you goes to Buttercream Wishes in Arlington, TX Crystal volunteered through Icing Smiles to make K her birthday cake. I can’t tell you how much this cake meant to our family. She made Stitch out of icing!!! Complete in his black hood and red saber. I need to get pictures from John and will post them soon. On top of it Ll the cake was to die for although I must admit I didn’t want to cut into it! It was too amazing.

Thank you all for keeping Kimbell in your prayers it means the world to all of us. I can’t remember if I told you guys her original wish but it was for a cure for her, her mom and grandma. She just wants to be normal.

Thanks guys

Love,
Kimbell, John and Paige

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Posted Aug 15, 2013 6:50pm

Thanks for the prayers! We don’t have much of an update. Her counts are continuing to drop which they say is typical in a situation like this, so it will be interesting to see if her marrow recovers with the help of the steroids. The infection is in the tissue above the port so the port itself is ok, such a relief. Kimbell told the doctor she wants out by her birthday and he said that is a good goal… So we shall see. She had another reaction to the Vanc today so now it will run over 3-4 hours plus the zosin. She gets them every 8 hours. They think the antibiotics are working on the infection but tonight she has a low grade fever so I guess we wait and see.

Thank you all!!

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Posted Aug 15, 2013 1:20am

Today has been quite the eventful day. Kimbell was having some vision problems and her new port didn’t look very good so we took her in to the doctor. Next thing we knew we are in the hospital getting tests run. Turns out that she has cellulitis (bacterial infection) in pockets around her port. Her incision from the surgery 5 weeks ago has now opened back up and is draining. Due to her complex medical issues the local children’s hospital had us transferred to Dallas Children’s via ambulance. She had a reaction to the Vanc which wasn’t fun so now they will pre medicate and run the infusion over 2 hours. They are adding another gram negative antibiotic by the name of Zosin. From what we understand at this point they will try and treat it with IV antibiotics but there is a good chance that she will have to go back into the OR, have the port pulled and clean up the infection surgically.

Ironically with our luck school started Monday! Kimbell’s 9th birthday is Monday so we are just hoping to get out in time for her birthday!

Thank you for your prayers!!

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Posted Jul 12, 2013 10:22pm

So the GREAT news… The steroids are working!!! Kimbell’s hemoglobin is 10.7!!!! So where do we go from here? She will stay on the steroids as long as they work. Her doctor said that it is amazing and wonderful news that her body is producing something it hasn’t done in a very long time. We have no idea how long they will work for but we are going to enjoy it while we can. I haven’t seen Kimbell with this much energy in so many years if ever.

Kimbell’s port also decided it had had it so this morning she got a new power port. She has been wanting a power port for a long time. She even got to keep the old port and got Nala from the Lion King. I have a feeling Nala might have surgery later this week so she can have K’s old port! Unfortunately they were unable to use the same area that the previous port was in and even put it in on the other side so she has 3 incisions and is patched up. Nick Leddy from the Chicago Blackhawks brought the Stanley Cup to the hospital today. Kimbell was just alert enough to get in a wheelchair and go! He was so kind, poor guy she was out of it and didn’t respond to him 🙁 BUT we got a great picture of the two and the Stanley Cup 🙂

The team here is still hard at work trying to find out what in the world is wrong. We ran CGH a couple of years ago in Dallas, well they took a sample here and reran it in MN. Apparently they overlap but they also look at some different things. Hoping that it will shed some light.

Thank you all for your prayers. They certainly make a difference.

Love you all.

Paige, John, and Kimbell

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Posted May 8, 2013 5:44pm

Yesterday Kimbell has her bone marrow biopsy and visit with the bone marrow transplant team. The biopsy went well although she is having a lot of pain with this one. Today is a restful day and then Thursday and Friday she will be doing testing with neuropsych.
First I have to tell you about Kimbell’s dream. Apparently she has been having the same dream for a while. In her dream she is a normal kid who can play and run and do normal kid stuff. Then she wakes up and hurts and realizes that it was just a dream and her nightmare reality is back.
So what did we find out yesterday. More than I cared to know I think but maybe not. I keep telling myself throughout this journey don’t ask questions if you don’t want an answer. Unfortunately we don’t always get answers that we like. First of is the gene results. The exon genome sequencing only looks at the exons and sacrifices depth of analysis for the quantity analyzed. There are 189 candidate mutations that will have to be analyzed. If it is decided that none of those are the mutation then they will move on to the entire genome sequencing. One mutation they found was a mutation on FAN1, this gene is correlated with Fanconi Anemia. Kimbell and I both have it which goes along with the MMC sensitivity testing done with our marrow. This gene is not the smoking gun per se b/c we know we do not have FA and this gene is not associated with the telomere problem we have. So the work continues.
As for where Kimbell is and where we go from here… Pretty much a lot of prayers. We asked about his opinion on schooling given Kimbell’s situation and we also asked about a 5 year outlook. It was made clear that schooling is, for Kimbell, a social exercise that is important but not an academic one. His suggestion given Kimbell’s continual decline is to pull her out of school and do whatever is legally required by the state but that home schooling is by far the only option. In regards to her GCSF her counts continue to drop and she is now at 13 mcg/kg. We knew the risks went up drastically at 8 mcg/kg but I always thought BMT was an option so I always felt like we had an out, maybe not a good one but an out nonetheless. So in short the consensus is the drug that keeps her alive will ultimately be the demise by causing AML (due to all of her issues this would not be cureable). He is still hopeful that the danazol will work well enough to get her off of the GCSF and thus buying some precious time. K has been on the danazol for 2 months, at 6 months they will make a decision. We know she is responding as her platelets are higher than they have ever been in her life. The problem with the danazol is like the GCSF it is another band aid not a fix.
I love Kimbell’s doctor he is brilliant and wonderful but most of all he is sincere and honest. We talked about BMT and once again we went through the scenarios where it will not be an option but we found out that due the mosaic FA MMC sensitivity finding that he is scared that the chemo will kill her before he is able to do the transplant. It is hard to transplant mosaic FA’s but as he said they have a disease that they know and a playbook to go by even if it isn’t well written. With Kimbell there is no playbook and you have the FA characteristics and the telomere problem which is an entirely different problem associated with a different bone marrow failure (DC). He believes Kimbell’s hope lies in finding the gene and finding a drug to treat the gene. The concern is that we are running out of time. So in answer to our 5 year question we need to enjoy the time that we have.

On many levels I think Kimbell understands more than we do but she was not present for the conversation and all she knows is that we did not find the gene that we need to find. Please do not say anything to her.

Please continue to pray that they find the gene and find a cure, or that if she must go to BMT that his fear is not realized. We believe in miracles and have seen them firsthand we just need another one. We know that with God all things are possible.

Prayers Please 🙂

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Posted Apr 10, 2013 1:52pm

As you all know we have been searching for an answer for so long now and have come up empty. Last I think September we drew blood on K, J and I and sent it to Ambry for whole exon genome sequencing with the hopes that they would find something so we would know what path to take wtih Kimbell’s care. About a month ago UMN got a call asking for my mom’s DNA. Yesterday we were told that we would have results on May 10th. The irony of the date is we are schedule to meet with her team on that day. We are hopeful they have found something as my mom’s DNA is not part of the test; however, we will not know until they tell us whether or not they have found the gene that is making us sick. So for all my prayer warriors out there please pray that they when they give us our results that there is a gene that they have identified. If we have a gene we can start looking for a cure or better treatments. This is so important especially now as Kimbell’s counts are continuing to drop.

Thank you so much!!!!

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We are out! GOOD NEWS!!!

Posted Mar 30, 2013 2:57pm

I think mostly because tomorrow is Easter but hey we are taking it. Kimbell still isn’t eating or drinking enough. She has less then one cup of fluid yesterday so if she continues at this rate they will just readmit her but for now we will celebrate Easter at home! Yesterday they took her off of her continuous dilaudid drip (which is 7 times stronger then morphine) and her boluses. She seems to be doing well we just need her to drink.

I must say God always makes things work for a reason. I know some people doubt this but for us it always seems to come true. God always seems to be with Kimbell and lifting her up when she needs it the most. The other day she couldn’t talk and Father Tom from the hospital came in and gave her a rosary. She was so happy because the one we bought her at the Vatican broke. She then proceeded to mouth her prayers and he commented on how impressed he was with her. This made her smile. So this “thing” in her neck we have been watching for some time. We took her to three different doctors all of which said it was fine, a corked vein and to watch it. Well I had requested a sinus CT scan and it showed up. John and I wanted it out but hey we all know with Kimbell nothing is that simple. The ENT was convinced it was cartilage and did not need to come out but left it to us. So off went an email to Dr. Tolar who said get it out and the tonsils.

This morning I got the path report. The “thing” was a rare benign tumor that can turn into squamous cell carcinoma of the neck and metastasize. Ironically this is one of the cancers we look for due to her telomere lengths. I am so grateful that Dr. Tolar wanted it out and that we noticed it. She has a large 2″ incision and is swollen and sore but that will heal with time. The tonsils had bacteria in them that was not strep so it is good they came out as well. All of her tissue and teeth also made it safely to Dr. Tolar’s lab so he can work his magic.

I must thank all of you for all of your prayers, emails, texts, visits, and messages as they really help. It is so nice to know that you are never alone.

Love,

Kimbell, John, Paige

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Posted Mar 26, 2013 1:40pm

Kimbell is in recovery and it all went well. Three teeth are on their way to her doctor in MN. Unfortunately the surgeon didn’t know what the neck mass was, which means she was wrong, the ped was wrong… They also removed some lymph nodes. They will send the mass and lymph nodes to pathology, run lymphoma tests and a few others. So now we wait.

How could I forget? She has started danazol which is the anabolic steroid and it is working on her appetite. She ate everything in site yesterday! It will take 3-6 months for it to work on her marrow.

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Posted Mar 9, 2013 10:31pm

All of the results are back from MN and we get to start Danazol! She will start it tomorrow morning March 10th. It can take 3-6 months to start working. Dr. Tolar says he think she will respond. I really hope so. She had IVIG today and I was rather bummer we went from 12.5 grams of IVIG to 20. I thought it was way too much but her IGG levels were good and definitely not too high so I guess that is the right call. We also increased her Neupogen dose this week. She had strep and some massive mouth sores. She even had to go to the ER for pain bc one mouth sore was in between her teeth. Her wish makers came today but she barely talked to them. Becky and Donna I wish you two were wish makers! In your spare time – haha. She was in bed all day getting an infusion. They tried really hard. They suggested she make a collage of pictures of what she likes. It will be interesting. We also got her MMC test results back. She clearly has an issue but not bad enough to be Fanconi’s. we looked at the test results which were graphs. She got a serious kick out of some of her levels being better then mine! Thank you all for your continued prayers we continue to be very blessed.

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Posted Feb 28, 2013 12:10pm

Thank you all for your prayers!! Kimbell and my dad are back. They made a whirlwhind trip up to MN and back again. She saw the endocrinologist, got all her tests done and now we just wait. If all the tests are good she gets to start the danazol trial!! Please continue your prayers as it looks like she will be the first girl on this drug and that leaves many questions to be answered. Thank you!!!!

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Posted Feb 26, 2013 12:54pm

I can never believe how bad I am at updating especially because all of the support and prayers mean the world to us. Saturday we went to a Make a Wish party and Kimbell told us that the best day of her life will be when she goes to heaven. I dumbfoundedly asked her “why?” Her reply was simple “Because I won’t have any medical problems. Everything in heaven is different. I will feel good.” Well it is very hard to argue with that logic but nonetheless not your typical conversation either!

So how is she doing and where are we in our journey? It appears that the exon genome sequencing we started last year may have found something. We should know something definitive in April but they have now asked for my mom’s DNA. This is exciting as we hope it might lead to other treatment options. This has been a hectic year. Kimbell has had a decent year but her counts continue to decrease. This week her and my dad are going to MN to meet with endocrinology and run a bunch of tests. When that is complete she will start a new drug that if it works will take 3-6 months but it will increase her hemoglobin. This is a big deal because she sleeps at least 12 hours a day and that is on a really good day. Some days she is sleeping 16 hours a day. Her bone marrow has obviously gotten worse but a diagnosis eludes us. Thankfully Dr. Tolar has not give up on us and is still searching for an answer. We saw some of his research come through when we saw him in December on my marrow although I think it was more confusing then ever. Turns out I have chromosomal sensitivity in line with a mosaic FA. In other words it makes no sens as our telomeres look like DC. On a positive note, Kimbell thoroughly enjoys watching me take shots everyday! I’m glad someone gets joy out of my misery! I can’t say it is miserable as I do feel better but for any of you out there with kids on G let me tell you those shots really do hurt!

For anyone in Fort Worth we have tentatively scheduled K to be admitted on 3/25 to Cook’s. She will have her tonsils removed and a mass from her neck. We have been watching this area for some time. We have heard that it was a twisted vein, and another doctor said cartilage but either don’t make any sense. It is growing and for the first time showed up on a sinus CT scan so…. we shall see. She will also have 3 teeth extracted in the OR as her hemoglobin is so low they won’t do it at the dentist office. I will update more when I know more.

Oh how could I forget. Kimbell got approved for her wish! The only problem is her wish is for a cure. The one thing they cannot give her. So her second wish is to be able to go to the airport anytime and get on a plane and go! I can’t wait to see the wishmakers faces when they hear that one!

Thank you all for the prayers we really need them more and more as time goes on!

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Posted Aug 31, 2012 12:57am

The beginning of school is always stressful. New teachers, new kids, new everything but for us it is always how long will she make it before she gets sick, well of course on top of everything else that is. This weekend she is supposed to be in a dear friend’s wedding. A friend that was her camp counselor at Camp Sunshine when she was 2! It is always amazing to me how much we go through yet how much we are blessed as a result of what we go through.

So of course I’m in Canada this week and I get a call. K is throwing up. John asks her if I ask the teacher to go look by the tree will she see it? Yes dad, I threw up in the bathroom, at lunch and then by the tree. OK so ePa goes to get her. She keeps throwing up. Walk ePa through where the Zofran is. ePa texts still throwing up. Call ped, go to ped, Kimbell we can send you to the hospital or we can give you a shot of Zofran. She’s not stupid – she wants a shot. Throws up again, falls asleep wakes up puking. Off to the hospital. IV Zofran still throwing up hours later. So now her and John sit. Well the ding dong gave her IV benedryl even though she has seizures so John is sitting on a perch watching her as she is passed out praying to God she doesn’t start seizing and puking at the same time. And so we wait… I wonder what tomorrow will bring? I hope this isn’t an indicator of what this year will be like.

On another note, we are waiting on NIH and Boston Children’s. We have applied for to drug trials, same drug different studies to see if Kimbell can get in. Please pray for this as it is extremely important to her, and us but especially to her.

Love,

Kimbell, John and Paige

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Happy 8th Birthday!

Posted Aug 19, 2012 6:57pm

As I laid down with Kimbell I thought about how she always reads what everyone writes her but rarely what I write. One day she will 🙂 Yesterday was supposed to be her swimming party but in typical TX weather fashion it was 80’s and raining!!! It never rains in August much less 80 degrees but TX weather does change on a dime. So we have postponed her party until next Saturday…

She had a friend spend the night, they watches The 3 Stooges and her cousin and Aunt Chole were here as well. We spent all of the previous week working on her 3 d Eiffel Tower cake. I think Kimbell and I baked around 40 boxes of cake mix. It is 30 inches tall, we are almost done… This morning she woke up to her day cooking chocolate chip pancakes one of her favorites. They were great but she didn’t eat. Then we went to see Ice Age 3 and get popcorn. She didn’t eat either. So for dinner I told her she had to eat what did she want – I want ravioli. OK ravioli it is. She ate one bite of one ravioli and at just after 5 pm asked to go to bed. As I laid down with her she asked “Mom why don’t I feel good?” I hugged her and all I could say is I don’t know honey, I don’t know. We are so blessed to have her smile, laughter, even tears with us over all these years, yet somehow it doesn’t get any easier. The unknown, the uncertainty of it all so we pray and we hope for a cure. Maybe one day that will be the biggest present we could ever imagine.

I love you baby girl.

Love,

Mom

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Posted Jul 30, 2012 6:56pm

Well we all know by now I am horrible at updating! Maybe Kimbell will start updating soon! Well April brought pneumonia and May brought a BMB that was fair. Slowly progressing nothing earth shattering. Hemophagocytosis was in all three cell lines, hemoglobin continues to drop and we are steadily in the 9’s now. Haven’t seen a 10 in a long time. We decided in May to trial K off of IVIG. This was to see if somehow since she was older she might be ok off of it and to see if it was causing her back pain. Well it is definitely the cause of her back pain. Unfortunately she got sick, surprise surprise, and she said she needed the IVIG. So we went and got IVIG at which time we found out her counts were low so now she is on 300 mcg of neupogen. I never thought we would get to an entire bottle. I think for now the plan is to see if we can go 4-5 weeks on IVIG but who knows. She’s been sick quite a bit this summer and with school starting… It’s kind of scary. School starts in two weeks! In three weeks our baby will be 8! I don’t think I ever thought I would see 8! I’m so thankful and blessed to have her in our lives. As for her summer well she’s been busy swimming, one of the few activities she can really participate in and she loves it so much. She has a new friend down the street with a wonderful family so that is awesome. She is tired a lot. I had to take her to NYC and Vegas with me and every time we got in a car she would say can I go to sleep now! Speaking of NYC and blessings. Our wonderful friend Raquel whom we met at Disney years ago took Kimbell to Times Square and some other places two nights in a row so they could have fun while I worked. I guess that is it for now. I hope you are all having a wonderful summer!

Love,

John Kimbell and Paige

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Posted Mar 7, 2012 9:04am

Well as it would go nothing is ever easy with Kimbell. The surgery did go well but she had a massive left shift which means she had a bacterial infection. She was at 18% bands. Well the hospital was full of flu and RSV so we begged to get out of there. We came home on IV vanc and merrem. Lets just say it has been a very long week. Problems with her port, getting up all hours of the night etc. On Monday we went to Hem/Onc and the good news is that her bands are down to 5% but obviously she still has an infection and fever. I think she is going to finish her antibiotics on Saturday and we are going to give it a couple of weeks. If she still has her fever then we will look further for the rest of the infection. In the meantime Kimbell is going nuts b/c she wants her port deaccessed; however, last night she changed her antibiotics all by herself and then when the merrem was done she flushed her port with saline, heplocked it, and clamped it! All by herself. My little girl is growing up…

Thanks for all the prayers and notes 🙂

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Posted Feb 29, 2012 9:16am

Kimbell wants everyone to know she is in the hospital 🙂 The surgery went well and her pain is now under control. She is watching Puss in Boots smiling away. The ENT thinks there is a good chance that the adenoids were infected so that is good. The tooth fairy visited her in the OR and she has now lost her first top front tooth! We were admitted on Monday and hope to leave today although with all the IV antibiotics that she has been on she has a left shift still and a low grade fever so who knows. H&H were really low again Monday night too so I’m waiting to see what it looks like today. Thank you all for the prayers and the notes, we are so Blessed.

Love,
K, P and J

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Posted Feb 21, 2012 7:58am

Well the good news is that she doesn’t have an infection in her spinal cord and she doesn’t have a tumor, bad news is that we have no idea why her back hurts so bad. He does think some of the complications are due to an infection. On that note we went to pulmonology and her pft’s are better than last year 🙂 no lung infection so we are going to take out her adenoids and hope that is where the infection in. Kimbell starts IV antibiotics on Friday at home and then they will admit her on Monday. Surgery is Tuesday. I’m not sure how long she will be inpatient but hopefully between all of the IV antibiotics and adenoids coming out again she will be better!

On another note while we were in MN Kimbell got a tour of Dr. Tolar’s lab. It was amazing. They showed her her fibroblasts, and her stem cells that they will grow into neurons, heart tissue, more skin and blood! Then we went to another part of the lab to see the genetically engineered nude mice. They use the mice to inject cells into the kidneys to grow the cells faster! It was so amazing and we got to meet many of the brilliant minds that are working on a cause and a cure for Kimbell. He also showed her fibroblasts (skin) from a girl who had a BMT using her brother’s marrow and how you can see her engrafting b/c of the xy chromosomes in her skin! Kimbell kept saying this is weird but by the end she told him this is cool and weird. He liked that answer a lot more!

Thank you all for the continued prayers they mean the world to us!

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Posted Feb 8, 2012 11:50am

We leave today to go to Minnesota. Please say a prayer tonight as K has a cold or upper respiratory infection and if it gets worse they won’t be able to sedate her tomorrow. Tomorrow morning she will be getting her MRI of her entire back and CT of her sinuses. Please also say a prayer that we find out why her back hurts so much and we find out where her fever is coming from. The chicken pox were not so nice to her marrow so we are waiting to see what happens. Her H&H was 9.4 and 27 so not bad but lower then it has been in years. Platelets and WBC have also fallen. Friday we see her BMT doctor to get results, see how his research is going and where we go from here!

Thanks!

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Posted Jan 28, 2012 12:28pm

I can’t believe it has been almost a year since I updated last. Kimbell has been asking if anyone has posted and if I have been updating and I keep telling her I will do it and then I never do. Bad mommy!

In May we went to Alaska and it was amazing, one of the best trips we have ever taken. In August Kimbell started second grade at SCS which has been awesome. As for how she has been feeling well it has been an up and down year. She has had a lot of infections, lung and sinus primarily. We spent the last four months trying to get her seizures under control which we think we have finally done. Thank goodness as that is just hard on her. Her last BMB looked pretty much the same. In October she was diagnosed with diffuse hypotonia and ankle clonus which explains why she never wants to walk. She has a wheelchair that she uses quite a bit but on good days you would never know. In November we went to Rome and her response to the David was “Why is everyone naked?” She loved the leaning Tower of Pisa and thought the Vatican was cool. John’s favorite was the Ferrari store, surprise surprise. In December I attended the American Society of Hematologist meeting in San Diego. Kimbell and John played while I worked at the non profit booth for DC Outreach and went to scientific sessions. They got to go in with the penguins, pet a seal, and feed a walrus! I on the other hand was in 7th heaven at ASH. The best news of the year is that Dr. Tolar got his IRB approved and he now has multiple people actively researching mom and Kimbell. NIH/NCI has finished the exon genome sequencing on us and this will speed up Dr. Tolar’s research. He does think that the neurological problems will be temporary and get better with BMT. Dr. Tolar has some amazing things going on and many people that are interested in helping Kimbell so it is giving us a lot of hope. My new goal is now raising money for his research.

We had a wonderful time celebrating Christmas and the simple fact that my mom is still with us but we were even happier to see 2011 go away!!! Between my mom getting sick, and Dean and Ron both passing away it was a terrible year. The first weekend of 2012 Kimbell went back into the show ring. I forgot to tell you that Kimbell showed Stitch in a match and won Best in Match. Her response was I’m never showing again! She won WD and BOW and got her first points on Stitch. That dog is so amazing and such a blessing. We just got back from Hawaii where Stitch threw a beach ball with her at the new Disney Resort which is paradise. Unfortunately we weren’t staying there L She had a blast in Hawaii. This year she has already gotten the chicken pox, who knows how it is even possible, and now she has a fever! We are going back to Minnesota next month to have some tests run and hopefully get some updates on how the research is progressing. Then we will go to Cincinnati and do our annual testing that we didn’t do in December. Kimbell is now doing IVIG at home, and she has PT/OT twice a week for an hour in Dallas L Please pray for Dr. Tolar and his team they are so amazing, my mom who is still struggling after over a year of being sick, and as always my little princess who thinks she is 21.

I will have John post some pictures soon.

Thank you for all your prayers and support.

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Posted Apr 17, 2011 10:29pm

We just returned from Kimbell’s first BMB at UMN. Unfortunately we didn’t get to do anything or see anyone but the trip went well. Kimbell was extremely nervouse because we have gone to Cinci for so long so this was a new experience. It couldn’t have gone better, John and I even got to stay for the entire procedure. She woke up happy and ate everything in sight! Unfortunately she has had a lot of pain with this marrow so we had to get her medicine back at the hospital and literally spent the weekend in bed. Now we wait for results…

Tomorrow home health care will be coming as we are finally starting Neulasta. I am praying this goes well because it would be so nice for the first time in over five years that we wouldn’t have to worry about needles and shots and alcohol swabs etc. every time we leave the house overnight. If it goes well she will get one shot every 10-14 days (depending on counts) versus a shot every other day. She is excited because it would only mean .3 ML going in instead of the .8 ML of GCSF. A lot less volume so we shall see.

We will update when we hear something!

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Posted Feb 25, 2011 9:05am

We got discharged last night and boy is Kimbell happy to be home. Now if we could just get grandma home. She had yet another surgery yesterday and she is now taking an injection for her red cells. You know what is really ironic about that is Kimbell is doing really well we are so happy and what’s crazy is right now my biggest concern is her red cell line. It is steadily falling, her hgb was 9.3. I asked the surgeon if she could have had bleeding from her surgery (it was 9.7 a few days before) and she asked how much it had dropped (total of 2 points in 3 weeks) and she said no way. Kimbell is so pale and she gets bursts of energy and then she is really tired. She has taken a few naps which is really out of character so we will see where she is Monday.

Thank you all that follow Kimbell and leave her notes of encouragement. She loves to know people are following her on her journey and that people are out there that love her. I think the coolest part about her surgery being in Fort Worth was the amount of support we got from our SCS family and friends in the area. Kimbell goes to school at SCS (Southwest Christian School). She had countless visitors, even the nurses were commenting on how many people came to see her. This is the first time she has been admitted in the last 4 years that she was in a local hospital. God has certainly been testing us this last 5 weeks with everything that is going on but he has sent so many people our way with such a generous outpouring of love it is truly amazing. My mom keeps telling me how blessed I am and she is so right!

On a totally different note, I have to tell you how much I love Minnesota and their people, it’s kind of like TX but a whole lot colder. We have such an amazing team up there and they care about their patients so much. The BMT doctor we are working with e-mails weekly to check on my mom and Kimbell. The geneticist we are working with is tirelessly combing through records. Well we ran a test called CGH last month where they look at all of Kimbell’s genes, unfortunately the local hospital couldn’t send it to MN b/c they have a contract with Baylor so we have been waiting and waiting. Wednesday night I sent Heather (geneticist)an e-mail asking if she had it and got back an e-mail saying she was out indefinitely for a family emergency. I was crushed b/c she is amazing. Yesterday morning she calls! Her dad is really sick so she is in and out, his name is Jay if you want to pray for him. She came into work Thursday saw my e-mail put K’s medical release in the fax machine and walked off. When she came back the results were there! Dallas doesn’t even know the test is back! So in genetics, findings are reported as a gain or a loss. K’s munc mutation is a loss. Baylor reported a gain in a gene. She has 3 copies of this gene and it isn’t associated with any known disease, BUT she doesn’t have any known disease. This particular gene is responsible for making proteins that go and manipulate other proteins so needless to say we have a lot of research ahead of us. It is possible that this could mean nothing but it is possible that after all these years we may have found something.

Sorry this is so long winded!

Paige 🙂

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Posted Feb 22, 2011 10:56pm

So the surgery went well. She didn’t have any sinus drainage like she should so this surgery should really help. They removed the adenoids which leaves open ulcers in the sinus cavity. This is the biggest area of concern as bacteria immediately go to the open ulcer. We are still in patient and will be until at least Thursday or Friday. Kimbell had quite a bit of pain today but let me tell you she had a little visitor today from school who brought her hand made cards from all the kids in her class. I wish I could frame all of the cards they are so beautiful. Then another friend came and brought her favorite dinner Mama’s pizza. It is all gone! Our SCS family has helped us so much in the last couple of weeks that words cannot convey how thankful and blessed we are.

Thank you for all your prayers and well wishes they mean the world to us. Also thank you to those of you that have stopped by the hospital Kimbell loves her visitors even when she doesn’t talk 🙂

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Posted Feb 16, 2011 5:58pm

Kimbell’s surgery is set for 2/22. Unfortunately due to my mom being in the hospital I haven’t made it to any of Kimbell’s appointments so John filled me in… Home health care will be coming Friday or Saturday to start Kimbell on meram and vanc so she doesn’t have to go into the hospital until Monday. Monday should be interesting b/c she was supposed to be at Dallas Children’s getting IVIG… but she will probably be admitted in the afternoon to Cook’s. She will have her surgery Tuesday and then hopefully be discharged Thursday or Friday if all goes well.

Please say prayers that all of this goes well. John turned septic from sinus surgery and my mom turned septic from an ERCP. Needless to say it is a bit nerve wrecking but I think Dr. Tolar and the local doctors have a good plan in place. Please also pray that my mom is ok, she is extremely sick with necrotizing infectious pancreatitis and they still do not know if she will make it. We thought Kimbell’s surgery would be canceled once again because she is sick, but that actually seem to motivate them to get it done sooner then later.

Paige

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Posted Jan 25, 2011 12:01am

I’m out of titles! Maybe because I’m exhausted….

So we had Kimbell’s sinus surgery scheduled and apparently she has croup so now she is on a weeks worth of steroids and the surgery is postponed. The pulm also wanted her to see a different surgeon b/c one is known for working with complex kids so we see her on Friday. Ironically this is the same ENT that helped John through his sepsis and subsequent problems.

On a good note my dear friend Nancy is doing ok after her surgery, Nancy when you read this know I miss being able to call you and I’m diligently work on the medical advisory board…

Another amazing note is Bodie got his transplant the same day Nancy had her surgery. He is on day 3 and doing well so far so keep the prayers coming.

I have to laugh b/c it seems the only time I ever have to update is when someone is in the hospital. With that being said, I’m sitting next to my mom! Kimbell was very cute when she found out grandma was admitted she instantly made her a glittery heart and hearts within the hearts and in the center of it was a cross. Now I just need my mom to get well b/c Kimbell just called and said mom you need to be home tomorrow night!

Thanks for all the prayers!!
I will post when I know Kimbell’s surgery date and admission date. The surgery will be at Cook Children’s in Fort Worth

Paige

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Posted Jan 14, 2011 12:34pm

I’ve never been happier to see a year go by, now I’m just wondering how this one will play out…

ENT put Kimbell on 30 days of abx and we repeated the CT yesterday. ENT called and said you need to come in to talk about surgical options the abx didn’t help at all. Kimbell is not a happy camper and after John turning septic this year from sinus surgery well… Local hem said she would need to be inpatient b/c it will turn her bacteremic… So we go Tuesday to talk.

Christmas was nice but Kimbell had a massive headache from IVIG and we finally took her to the hospital b/c she couldn’t take the pain anymore. They are giving us percocet to take home now to help out. On a good note the hem agreed to Neulasta so if insurance will approve it we will get to try Neulasta! Kimbell is very excited about this so I’m praying they approve it.

I had a conference call with Minnesota this week. They are going to run CGH on Kimbell which will give us a somewhat detailed view of all her genes! I am so excited as I’ve wanted this done for some time. They are still looking into the monocyte dysfunction and want to rule out what some say is a subset of DC and others say is not but the cool thing is I knew what they were talking about as Dr. Dokal presented it at Camp Sunshine!

Next week we see 2 different ENT’s, repeat her PFT’s and do all of her regular appointments.

One of our SDS friends, Bodie James, is getting his transplant on 1/21 here ishis carepage if you want to keep up with him. He is K’s age and I know how much K loves her messages… Please pray for him. His body held out long enough for his dad to get hoome – he is in the Navy. http://www.caringbridge.org/visit/bodiejames

Hope you are all well!

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Posted Dec 11, 2010 10:44am

We are finally done in Cinci and shouldn’t be going back anytime soon 🙂 It is funny how you take for granted the annual testing because year after year it is just something we do and don’t think twice about. Well the DEXA was good she doesn’t have osteopenia so that is always welcomed news. She has two spots on her liver which appear reactive in nature, I’m not sure how we follow up on that one or if we have to. I was so proud of Kimbell, with the short telomeres it is so important that we do pulmonary function tests well last year she couldn’t do any of them. In June she did do some but this time after a lot and I mean a lot of hard work she did every single one of them! There is one test in particular that everyone says is the most important and she has to sit in virtuall a closed box. The sides are clear but she is still enclosed. She handled it like a champ! The results of those tests showed she had decreased residual volume, apparently the only abnormal results were the ones they are watching for so we have to repeat all of the tests in one month. Pulmonology sent us for a CT scan of her sinuses. Of course it wasn’t normal either. So now we are going to ENT on Tuesday morning. We don’t get our neuropsych testing results until the 20th but they were able to quickly validate some of my comments. I told them that Kimbell’s mental math is great but when she has to do the math and write it, she isn’t nearly as strong. This isn’t exactly normal. They tacked on 1 additional test at the end of the day and the psychometrist about fell over. She said even without scoring the test it was obvious that her mental math is superior to the other! We saw our old hem from Dallas, he is going to look into Kimbell taking Neulasta, it is the pegalated or time released neupogen. It is only used in adults but Kimbell’s dose is high enough now that she could take it, and it would minimize the lows. It would also only be 1 shot a week instead of 3-4. He also thought we should look into starting prophalactic antibiotics to get her through the winter. When we were in Dallas last for IVIG they routinely run IGG levels. Kimbell’s have always been the same or withing a 100 points from infusion to the next. This time they were less then half. It could be the donor pool for the IVIG wasn’t as strong this time or it could mean that Kimbell is producing less IGG then before. So on the 20th we will run IGG again and if it is that low we will have to increase the dose. This stinks b/c last time we tried to increase the dose she got aseptic meningitis. I guess we will see what happens.

I hope you are all having a wonderful December, it is my goal most likely a dream to catch up on e-mail and maybe get a card out?? If not I’ll post one to the carepage 🙂

Paige

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Posted Nov 15, 2010 12:26pm

It has been a long and eventful time since we have updated. In October we went to Cinci for Kimbell’s bone marrow biopsy and to see neurology for her seizures (we are supposed to go every 3 months). Overall the trip to the hospital was uneventful; Kimbell’s marrow looks about the same. One of the worrisome deletions looked like it was gone but one of the new tests showed a new deletion that is seen in tandem with the deletion we thought went away L so that was a bummer. For some time now we have thought that despite everyone we have talked to and everywhere we have drug Kimbell that we were still missing part of the picture. This summer we spoke to so many doctors and continue to do so. Quite a few of them have mentioned that the time to go to transplant has either come or is around the corner. While we were at Camp Sunshine for DC weekend we met a transplant doctor that we instantly clicked with. So this past week we went to visit him. Kimbell really liked the hospital and all the staff which is always a relief. She even saw it snow and snow and snow today! We have talked to Kimbell a lot about transplant and she was rather bummed that we aren’t doing it now. She has made it very clear to us that she is ready to get really sick so that she can feel better. She also made it clear to us that she understands the potential downsides of the transplant as she asked us on our way into the hospital the first day “Will this transplant kill me?” We about fell over. So what did our new found specialist say??? He validated a lot of our concerns that others have dismissed and agreed that there is definitely something we are missing. He unfortunately validated what we had read on the EVI1 3q mutation and monosomy 7. He said that he wants to run some more tests over the next couple of months and that BMT will come but it doesn’t need to happen right now. He doesn’t think that Kimbell can go a year between marrows because her marrow is trying to turn but her cells continue to eat the dysplastic cells. We have known for a long time that Kimbell has a mutation that no one has been able to explain and as they are learning more and more about the mutation it potentially explains her unknown disease. I have asked for this to be looked at again as the research came out subsequent to her mutation analysis and have never gotten an answer. Well after this doctor combed through mountains of paperwork and came up with a new idea that correlates with her mutation. So on Friday they drew more blood checking the proteins that monocytes have to have in order for them to function properly. You have to have functioning monocytes in order to produce neutrophils and for those neutrophils once produced to function properly. If he is correct it would also explain her neurological complications. There are other things he is looking into but this was the most fascinating. He said that we have gone to the best people around looking for answers and in their defense they have run pretty much every test known to man and the bottom line is that whatever Kimbell has, the answer is just not in a textbook. He wants to make sure that there aren’t any experimental drugs or off label drugs that could potentially help her before we pull the trigger on transplant. He also said that it is very possible that the drugs we are giving Kimbell to fix some problems are creating more problems and at this point it is very difficult to tease these out. We know that the shots she takes to give her neutrophils at one point was causing her to have low complement levels. For people with complement deficiencies there is no cure and is a fatal condition. He reran her complement levels to see if the gcsf was still causing the same issues. Hard to believe that the drug that is saving her life can be causing a slew of other problems. So for now the BMT is on hold but it was made very clear that if things start changing and she gets worse that he is a phone call away and he will always have a bed waiting for her. John, Kimbell and I were all HLA typed 3 years ago when we were looking at BMT and we had a match then. Each BMT center does their own typing so they retyped Kimbell with high resolution and as soon as it comes back they will be doing another donor search. He said we need to know what our options are, do we have marrow donors, cords or nothing at all. Overall it was an exhausting and wonderful trip. I think for our family we all know in our hearts what is coming so in a way we are ready to get the show on the road but it is a relief to know that while most seem complacent with her gradual decline that there are a few brilliant minds out there willing to go the extra mile to make sure that we are making the right choice. As one of the researchers said, she could very well be the next big publication that everyone is looking for but as we watch her decline we need to do what is right for her, not the researchers.

On another note at the end of our trip to Cinci we stopped at Disney World. We seem to be making an annual trip out of the Halloween party as it is our favorite time of year – Kimbell and John decorated the house over Labor Day! So Kimbell is dressed up as Stitch and this beautiful girl taps me on the shoulder and says “Can I take a picture with your daughter?” I was a bit stunned but what the heck. Well it turns out that this girl was dressed as Lilo so we had Lilo and Stitch. In my defense Raquel has blonde hair! Raquel and Kimbell just clicked. She was with her mom and her cousin and we ended up spending the entire night with them, and met all of her friends that weren’t working! This trip was a fairy tale. So we meet this wonderful family and then Kimbell’s favorite character Stitch danced and danced and danced with her. The next day we saw our wonderful friend Sheri and ate lunch at Animal Kingdom where Raffi must have called his relatives because we got to watch them as we ate! So then Kimbell gets a call from Belle to go to Bippity Boppity Boutique, well who is going to argue with my favorite princess??? Not me! Kimbell got there and her Fairy Godmother was just that. She did her hair, nails and well Kimbell’s favorite princess is Tiana (which has subsequently changed Belle…) but Belle had given her a Belle dress. By the time it was said and done Belle and her Fairy Godmother had generously outfitted Kimbell in both dresses, tiaras, wands and a pair of shoes! Then it was picture time. Let me tell you this guy that was taking the pictures was amazing. For those of you that have seen Kimbell when she doesn’t feel good, you know it is impossible to make her smile. He talked like Stitch; got on the ground you name it to make her smile. We left there, gave her pain meds and off to her meeting with Belle. Thank you so much Belle, Aurora and Cinderella for making my princess feel like a princess. It was amazing as she twirled in her Belle dresses with the princesses and they made her feel like she was on top of the world. Then off to see the fairies whom Belle had told them Kimbell was coming and one of Raquell’s friends that we met the night before was the photographer! So JoJo, Kimbell and the fairies had a great time. The next day was our last day so Kimbell got up and instantly put on her Tiana outfit. We stopped by to show her Fairy Godmother how beautiful she looked J then off to see the princesses one last time. Oh my gosh words cannot describe what happened. She saw them twice. The first time well by know everyone knows Kimbell so they are greeting her by name and start asking her for her autograph! For Cinderella she drew a pumpkin carriage! Even the attendants were asking for her autograph. Well all good things come to an end so we had to go but wait Belle wants to see her again so we had to go outside and wait for a while. Take 2, we go back in and our friend JoJo is there and there are the princesses. Even the manager came in. Kimbell had a tea party with the princesses, but you know how shy she is, so they had to close the curtains. Belle put Kimbell’s Stitch costume on top of her head! They had to go get me Kleenex because I couldn’t stop crying. Heck I’ve got tears just writing about it!
Sorry this has been so long but so much has happened. We have been so blessed to meet some of the most wonderful people in the world and to finally be moving forward for Kimbell. For those of you at Disney reading this, thank you for always making Kimbell feel special and loved. It means the world to all of us. Lilo thanks for making her smile everyday she talks to you, you are the only person other than John and I she will talk to on the phone. Amy thanks for raising an amazing young woman.

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Posted Oct 6, 2010 12:31am

Life has been crazy! Kimbell continues to do ok. John on the other hand has been in and out of the hospital due to his sinus surgery and then turning septic. It has been quite the experience seeing him in the hospital and Kimbell visiting him there. Kimbell hasn’t been feeling well for a while now but nothing specific and is probably just her disease process.

We just got back from Camp Sunshine where we held our first ever DC family weekend. We are still not sure what Kimbell has but a while ago I joined the board of directors of DC Outreach with the sole goal of having this conference. After a plethora of work we succeeded and had a great time. We had some of the leading experts in the world talking with families and giving lectures. It was amazing and once again left us even more confused with what is wrong with Kimbell.

Over the summer we met with many physicians at various conferences and there seems to be two camps. Either they think Kimbell needs to go to transplant sooner than later or they totally disagree. While at camp we were fortunate enough to talk with one of the leading transplanters in the country. He made the comment of how it seems like no one is looking at the entire picture, this has been one of our concerns for a while now. Many things have changed over the year and while Kimbell is still able to enjoy things she doesn’t have all the good days she used to have and they seem to be further and fewer between. After multiple conversations it was once again suggested that a BMT needs to occur sooner than later and that if it was his daughter he would not wait. We leave for Cinci next weekend for another BMB and miscellaneous testing. After that we are going to go to a few of the transplant centers that we are interested in, talk with the doctors etc. and make some decisions. Please say prayers that this BMB gives us more clarification without hurting Kimbell’s chances at transplant. John and I really need clarity and guidance in the next couple of months, not only on the decision of transplant but also which center.

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Posted Aug 14, 2010 11:10am

Hi everyone,

I haven’t posted in a while because things have been so crazy and I think we are all trying to process what has happened this summer. On a positive note Kimbell’s daily fevers have disappeared! That is huge. We are now doing IVIG every 21 days which she isn’t happy about but has made a huge difference in her health. We went to SDS week at Camp Sunshine and had a wonderful time, it was great to see all of our friends from all over the country. We also went to the neutropenia conference in San Diego at which time we took John and Kimbell to Disneyland. Neither had been there before so that was really neat. We also were able to meet up with our friend from Walt Disney World, Garrett.

Now for everything else. We had tried to lower Kimbell’s gcsf dose and that didn’t work. Her counts went down 🙁 While at the neutropenia conference they announced a drug trial for a specific group of neutropenics. This trial replaces gcsf with a pill. We were so excited b/c Kimbell hates her shots. The excitement was short lived as after discussing Kimbell for 20 minutes with the physician in charge he said no and that Kimbell needed to go to transplant. We then proceeded to talk with the other experts and they all concurred. When we spoke with Dr. Harris he said that he is going to pull all of her marrows, reports, etc and go through them one by one with the hematopatholigist at Cinci. He will then send them to one of the top hematopathologist in the country to get his weigh in. We will do one more marrow in Cinci where they will run a different type of test on the marrow and if it turns out like cytogenetics then he would agree. He asked what her donor search looked like and 3.5 years ago it looked great. It’s really wild we knew things were progressing, we’ve known that for years. Everyone told us as she got older she would get healthier b/c all little kids are sick but the problem is she is getting worse. She knows it. We talked to her about BMT and the next day she said “Mom, if this works, if I live in the hospital for a month or 6 months but no more then a year b/c I won’t do that… Will I finally be free and still be with you?” We told her yes and she was genuinely happy. We also met with another hem who is one of the leading experts on telomere lengths and she said with cytogenetics not growing she recommends some other tests that might give us additional information on her marrow. So now we wait… I’m going crazy!

We did get the results from her egd, they were not normal and they think it explains the throat pain and the breathing issues. Unfortunately I have yet to hear from the dr…

On another positive note, we met Kimbell’s new teacher and she is wonderful. I’m really excited for Kimbell although she informed her therapist that she is scared b/c the days will be longer, she’s tired, it’s hard, etc. but she is excited b/c she gets a locker! Now I’m just praying she feels better and doesn’t miss the first day of school on Monday. She had a fever last night and is avoiding me this morning so either her fever is higher or she really doesn’t want to put away her junk. I’m hoping for the latter!

Kimbell’s birthday is Thursday! She will be 6. Please say prayers she feels good 🙂

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Posted Jul 3, 2010 10:57am

School ended over a month ago, it is so hard to believe. We were at a birthday party last weekend talking about kindergarten and everyone going into first grade. I can’t believe school starts in a little over a month! Kimbell is really worried about going an hour longer, hopefully it will go ok. K had IVIG on Monday and let me tell you Mrs. Johnson I was so bored! I didn’t have anything to cut out or glue or anything for your class! Who will keep me busy next year at the hospital? 🙂

As for Kimbell since this is about her… she is continuing to struggle. On a positive note we are doing IVIG every 21 days and the side affects aren’t as bad as they had been doing it every 28 days at a larger dose. Unfortunately that means a lot of extra days at the hospital. We believe Kimbell had a grand mal seizure last month. I was packing for a dog show, John was running errands and she came into the bedroom hysterical. She had woken up on the ground with a busted lip 🙁 She didn’t understand how or what had happened and no one saw it. I suppose in some ways it was a blessing as we didn’t realize that w/her having seizures she can’t swim by herself, someone has to be in the water with her at all times etc. Her neuro increased her seizure meds and we haven’t had any more incidences. I’m just thankful it didn’t happen at school, she would have been mortified. She is still having her fevers, difficulty breathing and hurts to eat. This stinks because our little girl continues to get smaller. She now weighs less then she did 15 months ago, she is a whole 18.4 kg. I told her for every kg she loses – over 3 at this point – I gain 3 kilos! She laughed.

Right now we are in Hershey, PA. She is so excited she is going to make her very own candy bar at the Hershey factory. Then we are off to see the in-laws. We will spend a few days there and then we are off to Cinci. She is so mad, she doesn’t want to go as “they never figure it out anymore”. I’m praying when they do her surgery they find why she hurts and is losing so much weight. Her surgery in on 7/9 so I will update then.

Hope you are all having a wonderful summer!

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Posted May 18, 2010 9:57pm

We are leaving on time! I just read Kimbell her messages she loves them although for all of you reading this she asked aren’t there any more? Dang!

Yesterday we had IVIG, we went back to the old dose and Dr. Harris is making the recommendation to the new hem that we go every 21 days. We talked about SCIG but with already having issues w/her GCSF shots we just can’t go there right now. So far she isn’t having a reaction, thank you Lord! We went to infectious diseases and they want to treat her for a fungal infection and go from there. We did a CT scan last night of her lungs and she didn’t have any fungus in there so that is wonderful. She was livid because she found out that she doesn’t have a “power port” which means she can’t have CT contrast through her port. They had to start an IV which reminded us why we have a port since we had problems w/it holding before they ever got to the contrast. Kimbell has informed all of us that she is getting a power port when they change her port out! We left the hospital after 7 PM last night! Bright and early this morning we saw ENT, they want GI to scope her again and do a bronchoscopy. We told them they had to wait a week and a half b/c Kimbell is going back to school. Then we went to dental – no cavities!! That is huge especially with all of her mouth problems, narcotics, and other meds she has been on in the last year. Neurology was next and all looks good there although we found out her migraine meds can cause labored breathing in 3% of the patients. This is actually a good thing and we are weaning her off as fast as we can to see if the med is causing the breathing issues, if so we may be able to forgo the bronch. We should start seeing a difference this weekend or early next week if that is the case.

We then left the hospital late this afternoon and drove to Columbus. We were trying to be good responsible parents and get our child to school Wednesday morning so we booked a 6 am flight – that is 5 am in TX! Now I think we are just plain stupid as we all have to be up at 3 am. We forgot her homework in TX, although we haven’t had time to do anything so I’m not sure that mattered much. So Mrs. Johnson and Mrs. Underwood if Kimbell makes it tomorrow and she’s falling asleep well it’s my fault! If she doesn’t make it we are all sleeping! I tend to forget exactly how exhausting these trips are to all of us.

Sleep tight everyone and thank you for the prayers they mean the world to us. Oh 1 quick story. We hit a book store on our drive Sunday to cinci, anyhow K wanted a Ratatouille book and then she picked up a book about Jesus. We told her she could have 1 but not both. She put the Ratatouille book back!!!! I was so proud of her. She wants to bring the book to school 🙂

We will be back for the procedures after school gets out.

Love,

Kimbell, John and Paige

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Posted May 14, 2010 11:09pm

I didn’t realize it had been so long since I had updated the carepage! It has been a very long two months. I think we had 1 good week after we came home from WDW and then everything started going downhill.

We lost our local hem to ironically Cinci Children’s! Kimbell never missed a beat, that’s ok mom we’ll see him in Cinci. Good thing he is fond of her as well and we will get to see him when we go to Cinci 🙂 Before he left he increased K’s IVIG 50% to try and get her feeling better, unfortunately the last two infusions she has reacted and had aseptic meningitis which is extremely painful. Monday she will get IVIG in Cinci and they are going to premedicate her with steroids this time so please pray it goes well. They ran her IGG levels and this is the correct dose so we need to figure out how to stay on this while minimizing her side affects.

We also increased her GCSF/neupogen to quite a high dose, higher risk of causing quicker cell transformation, in order to get her mouth into better shape. It worked! So her weight is stabilizing, I think. Her clothes that were too small in the fall now fit 🙁

Sunday we leave for Cinci. What was supposed to be a quick and easy trip has now turned into a big fast trip due to Kimbell’s constant fevers that are now 100.5-102 daily. She has constant throat pain, it is hard to breathe, and her tummy hurts. Unfortunately the new hem hasn’t done anything and continues to blame everything on allergies, ironically she doesn’t have allergies. Monday morning we will see infectious diseases, then go to IVIG and see Dr. Harris. Tuesday we will see ENT, neurology and maybe dental. Her memory issues that completely disappeared on the seizure meds have come back with a vengeance in the last two weeks. We are praying for answers. Everyday seems to be a struggle for her anymore and she has asked to go to Cinci and tells me to call Dr. Harris and Robin so they can help her.

On a positive note, the last two weekends we went to dog shows! We haven’t been to dog shows in so long and Kimbell loves it! She takes her stuff sits on the dog crate, walks puppies, meets new people and begs to show a dog! Last weekend was rough, our house flooded on Friday! then on Saturday our brand new car stranded us in East TX and a complete stranger gave us his truck to use! We drove to Louisiana and rented a car. Needless to say Kimbell got a lot of down time last weekend!

Sorry for the long update life has been crazy and K is going through a rought time. Praying for answers!

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Posted Mar 21, 2010 10:56pm

We had a great time in Disney and got to see our wonderful friend who gave Kimbell a walking/talking Stitch. Let me tell you he talks a LOT and walks really SLOW and K is the happiest kid in town! She LOVES him. Sheri we can’t wait to see you again and would love to come to the lake and watch or work whatever you need. Our trip was very relaxing until the hotel failed to shut the regfrigerator door and her neupogen was ruined. Minutes turned into hours and hours turned into days. We finally get new meds but it was a nightmare and wasted too much of our vacation.

As we were leaving Magic Kingdom Cinci called and it was Dr. Harris, I about fell over. So what’s the news. Well as it seems with everything nothing is never normal but they never know what to do with what the values they do get. According to the report he got she does not have mito so i said wohoo and he said no wait a minute. K’s muscle tissue is in Cleveland so he wants to work with the docotors there and us and Cinci to come up with a plan for more analysis??? I have no idea when this is happening April maybe, but he definitely wants us to go to Cleveland Clinic. I thought most of the tests have been run so I’m not sure what this will entail and what will come out of it. Have any of you been to Cleveland Clinic? Any experiences, suggestions, etc. Please let us know. I know we are going back to day hospital and neuro on May 17 and 18th if anyone is around.

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Posted Mar 12, 2010 2:10am

Kimbell’s mouth continues to elude us. We went to play therapy today and clinic to meet with child life and she had a fever. She got rocephin and all of her beads for her beads of courage program they just started. She was soooo excited, she had 40 beads and then got 3 more for her infusion. It was kind of neat to see her so excited about something. When we got home tonight she had to go show grandma and explain which each bead was for. She even gets a bead for each gcsf shot! Her weight continues to drop, she’s down 2.6 kg in the last 6 weeks. Tonight as she was going to be she asked if she could have the numbing medicine so she could eat. Poor thing. Today they swabbed her again (sores and nose) for viruses. We are praying it is HSV but that test was negative last month. They are testing for fungus and bacteria. I just hope something shows up so she can get some relief. She was a pretty good sport today until we got home so late and none of her homework was done!

Tomorrow is the wedding of letters Q and U at school and she is so excited. We are also supposed to leave for Walt Disney World tomorrow so I’m hoping she makes it to school and then we can leave. Hope you are all doing well. Thanks for the advice on the meds and all of the support. We are seeing a difference on the seizure meds which always makes it reassuring that we are doing the right thing. She is slowly adjusting to all the new meds she has to take and fighting less so that is great!

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Posted Feb 20, 2010 12:33pm

Sorry we haven’t updated. Kimbell was discharged finally 🙂 and we got out of town as fast as we could. Actually we asked Kimbell if she wanted to chill out over the weekend or go to her cousin’s 1st birthday party and she chose the party! So now we are frantically driving to Houston.

The biopsies should be back next week from the scopes. We are kind of curious to see if the white spots were yeast as Dr. Putnam expects. I thought it was wild but there were only a couple of spots and most likely due to all of the antibiotics she has to take. Her leg seems to be holding up well from the muscle biopsy, sore but she is tolerating it. John and I managed to get sick and are praying whatever we have Kimbell doesn’t get it because we are miserable. Kimbell’s brain MRI was clear so that is good. She had another seizure while we were waiting for the anesthesiologist and we think another one yesterday on the way to the airport. It is so frustrating because it is so hard to tell when she is having a seizure. The only way you know is if you are paying attention and she doesn’t respond, then you have to figure out if she is just being stubborn. They told us to pinch her and if she is seizing she won’t respond. If any of you guys have any ideas on how we can get Kimbell to carry her meds with her please let me know. We have to keep versed with us in case her seizure lasts 5 minutes or longer which shouldn’t happen but if it does she has to have it on her.

As for her mouth, whatever it is keeps coming back – she drains it and it goes away so they now have her on antibiotics. It will most likely require surgery in the next month or two. We are going to go to another surgeon and see if he has any ideas but hopefully it will stay managable and not require anymore hospital visits.

Kimbell and John have really gotten into looking at the carepage so thanks to everyone for all the prayers, emails, and posts. She is so happy to be out of the hospital although she isn’t happy about the number of meds that she is now having to take on a daily basis – she’s up to 10 pills and her shot. If you can say a few prayers for her on that front it would be great!

Thank you!

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Posted Feb 17, 2010 10:26pm

well, today is day 4…. wednesday, I think… the days are a blur when you’re stuck in a 10×10 room for days…wonder how those guys in jail keep it all together? hmmm…

anyway, Kimbell is a trooper. she finally had the three procedures today. All went well, nothing abnormal on the scopes from what the Dr. could see! EXCELLENT NEWS!! They are sending off the samples for testing and expecting to have results in a week or so. The muscle biopsy went well too… the Dr. put it right overtop the mole that was removed in December to minimize the scars on Kimbell’s legs. (very nice of the Dr!) When Kimbell woke from the procedure she barely opened her eyes and said “Mom, I want real food!” hahaha! Then she looked at the clock and said “I didn’t think it would take this long!”… What a child! 🙂 She’s full of comedy. Constantly has us laughing at something… 🙂

When we arrived back to our luxury 10×10 suite there was a very nice package & balloons awaiting! KIMBELL WAS SUPER EXCITED!!! She could barely wait to get out of the wheelchair to see what was in the bag! Our friends in Seattle Daric, Kris & Treena sent a special “get well” gift for Kimbell! So very thoughtful and sweet of them! Way to cheer her up! 🙂 Thank you!!!

We appreciate all of the thoughts and prayers. Please keep them coming. We likely will not know the results of the muscle biopsy for nearly TWO MONTHS!!! We have the brain MRI scheduled for 1pm tomorrow… the Dr’s are thinking we will be released on Friday! Yippie-Skippy! 🙂

Night Night everyone…. Think of us when you lay your head on those soft pillows, fresh linens and ever-so-comfy pillowtop mattress… 🙂 🙂 🙂 🙂 🙂

John

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Posted Feb 16, 2010 10:46pm

Kimbell told me to tell everyone what she’s doing – currently she is yelling at her daddy! For some reason I don’t think that is what she meant. I just got her a cup of ice, praying she will quit biting her lip. She keeps bleeding and she won’t leave it alone. So what did she do today… Well she wrote her meal order for tomorrow up, not too bad only 2 pages! Last night she started throwing up before she ever got to eat any of her food 🙁 The worst part was that she was soooo excited to get her Valentine’s cupcake with hearts on it and by the time she was finished it was covered in puke 🙁 She didn’t eat or drink all day but the nurse tonight got her to drink some apple juice and she had a bite of ice cream. She played on the computer some today, made a rainbow, sort of watched tv and that is it. She is scheduled for the OR at 2:10 tomorrow barring any unforseen circumstances. They are worried about malignant hyperthermia so that is why it keeps getting cancelled.

We were supposed to go home on Thursday but they can’t sedate her twice on the same day so Thursday is out because she still needs an MRI. Frankly we aren’t sure when we will get out of the hospital.

Thanks for the messages John and Kimbell check a couple of times a day and read them 🙂

Paige

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Posted Feb 15, 2010 9:14pm

Go figure… Kimbell LOVES to play in the snow…. as we left DFW the snow piled up… right after we got to the hospital last night the snow came and hasn’t let up…and won’t until tomorrow night! They’re expecting (depending upon what news station you follow) up to 11″ here! …and she’s going crazy stuck in the hospital room. -I know it shouldn’t, but it really kinda makes me giggle a bit… 🙂

…so the update for today… No procedures. The “docs” postponed them for 24+ hours to see if her fever that she’s had for the last six months magically goes away. …again, a giggle. 🙂 so, she’s gone without food for TWO full days now. FINALLY we spoke to a doc tonight that understood the situation. As I am typing this Kimbell eating every single thing in sight now and ordered enough food for an army! She will be back on a liquid only diet tomorrow and procedures the following day… She’s ok with it, but really wants to go back to the hotel to swim and eat brownies. 🙂

As you know, Kimbell always has a positive attitude about her health and nearly every other thing she encounters. I believe Paige and I are about to burst at the seams with all of the chaos and not knowing what is going on with her conditon…. hopefully these tests will shed some light…

Please say prayers… Kimbell needs them! THANK YOU!!! 🙂 🙂 🙂 🙂 🙂

John

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Posted Feb 15, 2010 1:07am

Hello,

This weekend Kimbell’s great grandparents came to Cinci which was great. We went shopping, ate, talked and played games. We even got some homework done. Kimbell started running a fever yesterday and today we had to take her in. We were admitted and are on the BMT floor getting fluids and IV antibiotics. I am still floored at the difference the fluids made. I’m also amazed at the thoroughness here, it is amazing. Kimbell is not happy to be here but thanks to grandma and her funny e-mails we have managed to temporarily cheer her up here and there. She just fell asleep so I was able to steal a few minutes on the laptop. If all stays the same throughout the night her procedures will go on as planned. I will update after her procedures tomorrow.

Thanks for everything!

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Posted Feb 12, 2010 9:18pm

Yesterday DFW had record snowfall and we missed it 🙁 well not entirely true, we watched it from a seat in a 777. Kimbell sat in first class while John and I sat in coach. She had a good time and thank goodness for the entertainment system and an incredible flight crew. We sat on the ground for roughly six hours! One positive thing as we watched the snow and were unable to play in it is that we met a group of ladies working the flight. Anyhow one of them came up to us at the end of the flight and said I just wanted to let you know that we are Christians and we will be adding your family to our prayers. We can always use more prayers. This same lady, her niece is moving to hem/onc with child life at Dallas Children’s! When we get home we are going to have to meet her.

We finally arrived in Chicago then Colombus and drove to Cinci. It was somewhere between 2 and 3 am. I was elated when we got to our room and they already had our refrigerator hooked up so we threw her meds in and went to sleep. As we were leaving this morning, in the same clothes, they called and AA had delivered our bags!!!! We were pumped.

So today. Well this is the second time I’m writing this update so that gives you an idea. This time I’m going to copy it before I submit it! We went to GI, they are going to do the colonoscopy and EGD on Monday. The prep isn’t like an adult’s so that is a huge relief. He said that she very well could have cdiff and will be rerunning all the tests previously run but with samples from the small intestine. The doctor thought we might find out what is causing all the problems but unfortunately there is also a chance we will not find any evidence of what is causing her issues. They know there are GI problems in inherited bone marrow failure syndromes that they do not understand, particularly DC. So for now we are praying for cdiff b/c it’s treatable.

On to neuro. Kimbell has a great neurologist, it was kind of funny how we ended up with a seizure specialist for migraines but a few years ago he was on service so that is what we got. Well I suppose everything happens for a reason b/c today he decided she is having seizures. Apparently sedation can mess up eeg’s so we had to rush down to get an eeg done which will determine along with Dr. Harris which med she will go on. It was all quite surreal as we were given our instructions for the seizures. Kimbell has “silent” seizures so most people would assume she is day dreaming and frankly never notice. Kimbell will also have an MRI next week for some other neuro issues we have seen recently.

Then to hem/onc. Can you tell we are exhausted by now? 🙂 K was in her eeg when they called and said the doctor is ready to leave, it was that late! We went through all the events in the last month and they are going to confer on Monday but are looking at admitting her next week to try and figure out what is going on. She is clearly in pain which we are hoping that is what is causing her high blood pressure and pulse. The irony of the blood pressure is that her migraine medicine is also used to lower blood pressure! She’s still having her fevers, and just not doing well. Today she had petichae pop up and an hour later he nose started bleeding. Maybe this is a blessing in disguise b/c now we are going to hem/onc before surgery to run counts and type her. We also talked about her port and they have a team at CCHMC that all they do is access ports. They are going to look at the port prior to surgery, they may tpa it and see if that works and we may end up going in on Monday and adjusting and/or replacing the port. Ironically we have a surgeon on Monday who does a large number of the ports for hem/onc.

Lastly if anyone reading this knows the front desk staff or Mark in housekeeping at the Marriott they are wonderful. We came home from frankly not a great day and there was a bowl of candy, apples, chips and rubber duckies (one is a princess) for Kimbell. We went to dinner, to a place we always go, and it was awful! Then I ride up on the elevator with Mark and we start talking. He said wait a minute this is DJ’s friend, he got her the mac and cheese a long time ago. So that man got me a good 30 minutes of pristine silence, priceless. He came back with a strawberry sundae with chocolate covered strawberries. Silence is golden for stressed out parents!

Sorry I’ve written so much. Thank you everyone for the posts, calls, texts etc they mean the world to all of us.

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Posted Feb 10, 2010 9:59pm

Hey everyone,

Well we leave tomorrow afternoon via Chicago. It’s supposed to snow here and in Ohio so that should be fun. Kimbell is excited because she gets to swim for a whole week and she isn’t have her marrow done. We haven’t had the heart to tell her about the muscle biopsy or the scopes… Please pray she goes through Monday well. Friday we will be at GI, hem/onc and neuro if anyone is at the hospital. Monday we report to surgery at 9. They have the OR booked for 3.5 hours so we will be there most of the day. Then back to hem/onc on Tuesday and who knows about the rest.

I will update again on Friday if we learn/hear anything.

Paige

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Posted Jan 29, 2010 9:12pm

Since I last updated a lot has happened. We spent virtually the entire week at the hospital but were never admitted which frankly would have been easier! The antibiotics from the ER helped but by Monday night she was in bad shape. Tuesday she was given more IV abx and pain meds but the pain meds couldn’t keep the pain under control and she literally chewed a hole in her cheek. It is awful. When the pain isn’t controlled she doesn’t sleep, nor do I, and she chews the abscess which probably keeps infecting it. Thursday she finished one of her abx but they added another one on Tuesday. Today she had IV antibiotics again and we are back to where we were on Monday… This time though they have added a mouth wash to kill the bacteria (that will be interesting to see tonight!) and they added hydromorphone for break through pain. The thought is that if she can keep from biting her cheek and lip then she should heal. She continues to have a fever despite the fact that the motrin isn’t lapsing and the hydrocodone has the maximum amount of tylenol. If it goes up we will have to go back over the weekend. Please pray that the addition of the pain med will allow her to sleep, we really need the sleep and she really needs her pain to be controlled.

Thanks for the well wishes and calls they mean the world to us.

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Posted Jan 25, 2010 5:23pm

Yesterday we finally took K to the ER, the worst part is that she didn’t really care which told us it was past time. We were there all day and night. They gave her IV rocephin so when she woke up this morning and her abscess looked better we were relieved. We just don’t know if is the rocephin or the clinda working now… They had problems with her port again and she asked me what would happen if they couldn’t get it to work, she was quite stressed. Thankfully it worked the second time. They want her to get her gcsf everyday and we go back to hem/onc on Thursday unless she hits 101 again then we are off to the ER. Please pray that if it is the clinda it gets better quickly and if she needs the rocephin then spike quickly so either way she gets better faster! This has been going on for 10 days now and she is sick of it.

Thanks

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Posted Jan 23, 2010 4:55pm

Hi everyone,

It has been a long month and I am so sorry I haven’t returned most of my e-mails! Previously I had mentioned our friend Elizabeth whose son was not doing well, somehow he is still holding on. This is much longer then anyone could have remotely hoped for, please keep saying prayers for his mom Elizabeth and the rest of his family.

As for Kimbell well on a good note we went to Niagara Falls, Canada for the long holiday weekend last weekend. We had a blast but unfortunately on Saturday it looked like she had been hit in the face with a bat although no bruising, cut anything. It was the wierdest thing we had ever seen. Her lip just kept getting bigger and bigger. By Monday we decided maybe we should call hem/onc but not 45 minutes after we called the swelling had gone down. The next day I’m telling our friend in San Fran about it and she said “Paige take her to the doctor she has an abscess.” I about fell over so sure enough Tuesday night was spent dealing with the abscess. Then we get home and Kimbell says “Mommy my hand hurts.” I look and her cut that was virtually healed had turned into cellulitis. So…. Friday her temp decided to go up and the abscess started getting worse so we changed antibiotics. Her temp today has decided to go back up again so I’m sure we will end up in the hospital over the weekend. What really stinks is I honestly don’t know what we can do. We increased her GCSF 2 weeks ago. On a positive note her cellulitis is so much better (I love Clinda!).

We are going to fly into Columbus on 2/11. Her scopes, and muscle biopsy are schedule for the 15th. I’m listening to Kimbell talk to John she’s bleeding and her mouth hurts… She’s such a strong kid, sometimes I think it would be easier if she complained all the time. Then I’m sure I’d say I wish the opposite.

Hope everyone is well.

Love,
Paige, Kimbell and John

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Posted Jan 11, 2010 9:30pm

We had a conference call with Dr. H last week. HLH is no longer on the table. We are going to run the test for hyperIgM which can cause severe cytopenia and all of her other issues. It would be another good dx. The reason we are going back is to see GI and to do a muscle biopsy. Apparently Dr. H has seen two other patients with Kimbell’s telomere lengths and both ended up having a mitochondrial disease. Unfortunately this isn’t so good. Not sure when we are doing the next marrow. The local hem said 6 months and frankly we were so floored with Dr. H that we didn’t even ask! I think we will be in Cinci the week of Feb 15.

Hope you are all doing well.

Paige

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Posted Dec 16, 2009 11:25pm

I am horrible at updates! I am on the plane back to Fort Worth as I’m typing this with a very tired little girl. Cinci as always was interesting. We had all our annual appointments which were for the most part uneventful and then there is the marrow 🙂 Kimbell came through her bmb and the mole removal ok. She was not in nearly as much pain as last year and we were able to control it w/o narcotics so that was good. We got her FISH results today which were just ok. Her 20q went up significantly but is still lower then it was in January. She also had a monosomy 7 and 7q show up this time which stinks but again were not high. We are waiting on the path reports to find out when we have to go back. With the FISH results so different from her other marrows I highly doubt we will get a year pass. On another note Kimbell’s daily low grade fevers came back after they had been gone for over a year. This time; however, her SED rate is extremely high which is not a marker that was there last time. With this new finding Dr. Harris decided to rerun all of her immunology labs as they have never been completley off but never completley normal. The reason this is so big is because while we have been in the DC camp it has never been confirmed and there has always been some doubt. This other disease is called HLH and compared to DC it is the lesser of the two evils. She has a mutation on one of the genes affected in this disease but when they found it almost 3 years ago they ran it through 3 software models, 1 said it was disease causing, one said it wasn’t and the 3rd said it didn’t know. They have no idea what telomere lengths look like in HLH patients as it has never been studied. HLH requires high dose chemo and BMT but the kicker is that BMT’s are successful! The testing will not be back for 2-4 weeks and we may have to go back for a spinal tap so for now we wait. The path report from her marrow probably won’t be back until next week. So for now we wait.

On another note a wonderful woman, Elizabeth, e-mailed today. She is on the DC Outreach board. Elizabeth’s son, Alexander, has had a long hard fight with DC and unfortunately is losing his battle. They have decided on palliative care so that he may spend his time with his family. Please pray for him and his family during this most difficult time.

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Posted Dec 4, 2009 2:58pm

I hope everyone had a wonderful Thanksgiving!

Kimbell had IVIG on Wed before Thanksgiving which was a mess (they gave her the kind she has a reaction too) ended up in the ER later that night and were discharged sometime the next morning! We went home, packed, and left for the airport. Paris and Zurich were so cold but Kimbell has decided she wants to move to Paris b/c of the Eiffel Tower! She is also a huge fan of the nutella crepes. They were so good.

Next week is a crazy week for Kimbell. Tues she has IVIG in Dallas and then Wed we leave for Cinci. We have a very full week. If anyone is at the hospital we will be in neuropsych until around 1. Then pulmonology at 1:10, hem/onc at 2:30 and then back to neuropsych at 3:30. Kimbell’s BMB and the removal of a not so good looking mole is at 6:30 am on Friday and then we got to ultrasound. Tuesday the 15th we see the infamous Dr. Harris at 8:30, dental and dexa scan. Wed the only thing we have is neuro at 8am and then we should be flying home! Kimbell is very excited about going so she can see her friends but would prefer if they didn’t have to put the stickers on her back 🙂 She is too cute.

We will update next week!

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Posted Oct 2, 2009 1:20pm

Wow how time flies. So what is new… Kimbell is doing OK. She’s been sick since the beginning of October and on a lot of antibiotics but that certainly hasn’t made her excitement of Halloween any less!! How many more days, she’s been asking since Labor Day! We have our dates set for our next visit to Cinci Children’s, we fly in on Dec 9th and out on the 16th. We are going to go to WDW over the weekend but other then that we will be there and hope to see everyone.

On a very exciting note, Kimbell read me a book last week!!! I knew she could read but it was so wonderful to actually hear her read to me. I just read her what I wrote and she said to tell everyone she read the cat and the crab stories 🙂 She is so proud of herself.

One other thing if you can please pass the word around, DC outreach is selling entertainment books – the ones w/all the coupons in them… If anyone typically buys one, they are a great deal I bought 6 last year! I would greatly appreciate it if you could buy it through this link http://dcoutreach.com/ContactUsDonations.html We really need to raise money so that we can fund research and have some money to have a family conference. As one of the mom’s on the board said, if we don’t have a family conference her son will never meet another person in his life with the same disease… If you are in Seattle or in Fort Worth I have them so you don’t have to get them online. If nothing else can you please pass the word on?

Thanks

Paige

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Posted Aug 26, 2009 10:19am

Kimbell managed to stay well for her birthday 🙂 We didn’t end up at the hospital until Friday for IV abx. She was so mad b/c I pulled her out of school. John was in town all week so that was a nice treat for all of us. Her Hannah Montana party was on Saturday and she had a lot of fun. Her bloody noses continue to get worse so I called begging for an appointment with ENT, they responded with can you be here at 2? There are a few vessels they can cauterize and they will go down with a scope to make sure the bleeds aren’t coming from further back. That will happen tomorrow. Next week she has IVIG and then for Labor Day she gets to go to Mickey’s Not So Scarey Halloween. Kimbell is so excited. Thank you everyone for the Birthday wishes she loved them.

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Posted Aug 17, 2009 10:28am

Mommy how many more days until my birthday??? As if she doesn’t know, we are reminded daily 🙂 That also means I am way overdue to update. Kimbell has been doing ok. She is having to adjust as her body isn’t so willing to cooperate anymore. We have had to increase her shots quite significantly which has helped some but not as much as we had hoped. She has been in and out of the ER and doctor’s a lot over the last 8 months and wants to know when she is going to feel good again. On a positive note her hemoglobin has come up from the last update and is somewhat stable so that is great. On anther positive note we have made it a couple of weeks w/o an ER or Dr. visit or antibiotics. She’s funny she had a stubborn bout of cellulitis recently so now every cut she shows me to make sure it is ok!

As for her question, Kimbell will be 5 in 2 days! I told her this morning that 5 years ago I didn’t think she was ever going to come out she was way entirely too content to stay in my tummy! Boy was she mad when she did come out!

Hope you are well

Paige

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Posted May 17, 2009 10:27am

Last night we spent at the ER. Kimbell’s hemoglobin continues to fall and she is having a lot of back pain where the BMB/skin biopsy was done. They let us go on IV abx but please say a prayer for her pain and to find out why the hgb keeps going down… This just stinks.

Love
Paige

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Posted May 16, 2009 11:36am

We went back for IVIG on Thursday and K’s counts are completely out of whack. Her ANC is over 5,000 and no one can explain how or why so we are waiting on the path report from the marrow. Her hemoglobin continues to fall. Hem/onc gave her some tylenol with codeine b/c she is in so much pain so this visit we spent either at the hospital or in bed at the hotel. Worst part being we weren’t at “our” hotel. Kimbell looked at her dad Thursday night and said next time we are staying at the Marriott! She’s still in a lot of pain and she shouldn’t be which is kind of bothersome. DJ she asked about you when she was coherent but this trip flew by and she pretty much stayed in bed. Next time… Now we wait for Dr. Harris to let us know what is going on with her marrow. I hate waiting 🙂 Please pray her pain goes away, we’ve been doing heat packs and her meds and still having a rough time.

Paige

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Posted May 13, 2009 5:51pm

We just got back to our hotel and we are so exhausted. Kimbell seemed to have quite a bit of pain so we were in PACU all afternoon. The dental work went well, and as far as I know the BMB went well and NIH should be getting their stuff including the skin biopsy. That is always a relief. Kimbell’s counts we extremely out of whack this morning so I’m hoping they were mixed up 🙂 with someone else. I guess we will know more when we get counts done tomorrow. Hope all is well.

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Posted May 11, 2009 12:57pm

Hi everyone,

So we finally have a confirmed schedule for K’s upcoming week. We leave early tomorrow and will be at the hospital tomorrow afternoon. K goes into the OR Wed morning, neuro late afternoon and then we will be in day hospital for IVIG Thursday morning. She is still getting frequent fevers so not sure where that is coming from, maybe we will figure it out 🙂 Bone marrow results are taking up to two weeks to get back so it may be a while until we know how that is looking. If anyone is in Cinci give me a call!

Paige

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Posted Apr 27, 2009 11:51pm

We spent today in the ER, same thing we did last Monday. hmmmm. On a good note Kimbell’s hemoglobin is holding on 🙂 I’m not sure what is wrong with Kimbell, they thought it was pneumonia or the flu and it isn’t either. So then they said croup. They gave her steroids which helped a ton until they started wearing off. Kimbell has been laying down constantly since last night and coughing her lungs up. They also gave her IV antibiotics with instructions that if she has any fever tomorrow to come back. Unfortunately she is passed out in bed and her fever is rising on motrin and tylenol.

We are supposed to leave on Friday for Walt Disney World so we could really use everyone’s prayers. Cinci is still looking for a block of OR time so while we are hoping to be there the week of the 11th, we still aren’t sure.

I hope everyone is doing well.

Paige

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Posted Apr 17, 2009 3:10am

I hope everyone had an awesome Easter!! Kimbell had a blast.

I didn’t realize it had been so long since I had updated until a friend called 2 weeks ago and said what is going on? ooops. So some good news Kimbell’s hem in Dallas increased her IVIG dose last month to see if it would help her and it did! She broke her fever and had 3 great weeks. Of course she popped a fever on Easter but she had her infusion today so she should start feeling better this weekend. She gained back some of the weight she’s lost in the last couple of month and even grew half an inch so that was awesome. My mom asked her if we were going to see Grandma Stauffer and I realized we haven’t seen her in forever because Kimbell has been sick since before Christmas so we are going to go see her this weekend – we just got to Seattle tonight. Other good news, Kimbell’s hemoglobin is holding at 11 for another 4 weeks. Still low but no complaints.

On the not so good side we will be going to Cinci in May. We went to the dentist on Monday and poor Kimbell’s teeth are having a lot of trouble. Instead of sedating her twice in such a short time they said we could do it all at once. Please say prayers as we have no idea how to explain to Kimbell what they are going to do and knowing her she is going to ask why…. no idea how to tackle that one either.

Hope you are all well.

Love,
Paige, John and Kimbell

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Posted Mar 15, 2009 11:09am

Friday was our final day, we were so tired we didn’t do anything but lay on the bed when we got back to the hotel and go swimming…

So what did we learn, nothing on the hematological front. I think they were expecting to find something that had been missed but they didn’t. On a good note, we always knew that Cinci was providing great care to Kimbell and this confirmed that thought. They can’t say she does have DC but they can’t say that she doesn’t. NIH has the largest number of DC patients, all 50 of them! Talk about rare. Anyhow they are leaving her in the population of 50 and Dr. Savage will continue to look for new genes and let us know if she finds anything. I asked if the malignancy risk in DC is correlated with the telomere length and that is something they have never looked at. John asked if we would be coming back and they said no, I thought that was interesting as all the documentation says you have the option to come back annually. I guess they need to update their paperwork. On a positive note they did say they are available at anytime if we ever have any questions so that is nice.

Maura in response to the 20q. They really don’t know but as Harris said it is not seen in the general population. It is also typically seen in SDS.

What I did learn, NIH follows 4 IBMFs. SDS, FA, DC and thrombocytopenia absent radia. In DC they have not seen the immunodeficiency that Kimbell has as well as the chemotaxis issues (neutrophil function). I think they thought we were a bit crazy keeping Kimbell’s anc so high so I had to laugh the last day as we were walking out and Kimbell shows Dr. Savage her mouth sore! What I will say is everyone we met was wonderful and extremely respectful of Kimbell as they were examining her. They definitely look at you with a fine tooth comb.

We are now back in Seattle and Kimbell has yet another fever so I’m sure we will be back in the ER today. I’m hoping that maybe they will increase her IVIG dose as this has been a rough couple of months. I asked but haven’t received a response.

Thank you everyone for all of your support, Kimbell, John, and I loved her messages.

Love,
Paige, John and Kimbell

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Posted Mar 12, 2009 8:44pm

Tomorrow is our last day!

So Kimbell told me to tell you that mom and dad are being as brave as her but I disagree whole heartedly. She’s also excited to go to Seattle and see her friends and go to the zoo 🙂 Caiden she can’t wait for camp!

What did we learn today?

Well apparently Kimbell’s ear infections are worse then we thought, especially in the ear that didn’t get as many. There was quite a discrepancy at audiology today that is due to ear infections and potentially antibiotics. They told me if she has an ear infection and doesn’t respond to be patient as most likely she truly didn’t hear me! I had them repeat it twice and I didn’t think I heard them.

Apparently there is a 24 stomach virus going around and they decided that is what Kimbell had. They checked her out since she threw up all night, that was fun. Some good news, my bone density is good despite the ridiculous amount of coffee and coke that I consume. My hearing is “excellent” so I finally beat John on something 🙂

We met with genetics today which was interesting. We actually were able to go in depth on some of the things are were very happy to find out that our cells will be “on hold” at Gene DX so that if they find our defective gene at NIH then gene DX will be able to clinically confirm it. Kimbell also got her NIH badge which she just thinks is too cool so she is very happy.

A while back I “met” a woman whose son has neutropenia on the internet. She is a nurse at NIH, anyhow when Kimbell received her telomere results we already had our trip to Australia so we were unable to attend the DC conference at NIH. Donna offered to go to the conference for us, she took awesome notes and even sent us all the hand outs. Well tonight we finally were able to meet her! It was awesome and Donna if your reading Kimbell is in bed with her slippers on, she asked if we wish we were so lucky too!

On a side note one of our friends with SDS is in the hospital with an infection. Please say a prayer for him, his name is Aiden. Also our friend in NC is having a lot of issues, please pray for her, her name is Shannon.

Thank you all Kimbell smiles so much with every message!

Love you all,

Paige

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Posted Mar 11, 2009 7:44pm

Only two more to go!

Today started off super early as grandma had her BMB today, Kimbell was quite excited someone else in the family was getting their bone marrow taken out. When grandma came out she gave her strict instructions on what she could and could not do with the sticker on her back and her IV in. 🙂

Thank you for the prayers. Last night after I posted Kimbell was so anxious about the skin biopsy she couldn’t sleep. She talked about it for well over an hour, I think I may have passed out on her… She asked if we really had to do it as she was nervous. In over 4 years of tests, she has never once asked if she had to do it, nor has she been so scared so this morning when my arm was still hurting I said no. We agreed to have the skin biopsy done this summer while she is sedated for her bone marrow biopsy. When I came out to tell her she was so relieved and had the biggest smile, she started jumping up and down. What a great way to confirm I made the right decision.

So what did we do today. Kimbell saw a nurse practitioner with a PHD in research science for Gi today. That woman knew more about GI and did the most thorough exam I have ever seen. She said she cannot make recommendations to us but will to our team who can then decide whether or not to work her up here or work with a GI doctor back home to run all of the tests and to get to the root of Kimbell’s GI issues. She said if nothing else they can at least give suggestions to alleviate some of the pain issues she has. I’m hoping they decide to run the tests here so we can get it over with, either way we are looking forward to hear what she has in mind.

We also saw neurology, she was a wealth of information and told us what was up and coming on the migraine front which was good to hear. She also explained Kimbell’s migraines in more detail, what is happening and why Kimbell cannot say the words she knows she is trying to say. When you have a hemiplegic migraine in the area Kimbell does you get aphasia just like you would from a stroke. The individual knows what they are trying to say but they do not have the ability to make the word come out.

Unfortunately nothing hilarious happened today. ENT told John he needs to have his tonsils taken out and the ophthalmologist told him he needs to see an eye surgeon so he wasn’t too happy. We got to the hotel tonight and Kimbell started throwing up everywhere… so now we are taking it easy.

Hope you are all well!

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Posted Mar 10, 2009 9:26pm

We started the morning at 5:30 this morning, that will sound great when the alarm goes off tomorrow at 4:30 🙂 Today they took “lots and lots of blood mom” from all of us, which Kimbell loves to watch the rest of us get poked on. Kimbell had her EKG which floored her that you can have a test with out needles! It was normal as well as her echo so that is good. Apparently my lung capacity is nowhere near my husband’s, does that surprise anyone? Also John has good hearing, I would have bet on the fact he needed hearing aides. This gives new meaning to “selective hearing”. Kimbell and I had full body x-rays done and she was fantastic, she held still for every x-ray, it took an hour and they didn’t have to repeat a single one. I was so proud of her. She liked the radiology tech so much she bought her a sucker! That was first. We also went to the dentist, apparently they are seeing that it is fairly common for those with IBMF to have short roots. Kimbell’s teeth are delayed in growth but nothing big so they couldn’t tell much. She does need to go to the dentist though… They took our pictures with a bunch of different machines, she didn’t quite know what to think of it. One reconstructs your face in 3d. We came back to our hotel and slept for 2.5 hrs, ate dinner, she swam with dad and now we are going back to bed. This is definitely a fascinating place and everyone is extremely nice which helps.

Thank you for the prayers, they definitely keep us going. One extra one though, they want to do a skin biopsy on Kimbell so they have a living cell line. We didn’t think anything of it until my arm kept hurting after the fact. They think they may have hit a nerve, and apparently went deeper then normal because I didn’t complain… This procedure is usually done at the same time as a BMB so you don’t even know it. Anyhow we try to keep Kimbell’s pain to a minimum and honestly I can’t believe my stupid arm still hurts. We don’t have to do it but it would be good to so please pray for our guidance on our decision, it is supposed to be done tomorrow morning and we are torn over it. The living cell line would be for research so we wouldn’t have to send in blood everytime they wanted to test her for something. Obviously not a requirement. If it was it would be done.

Thank you also as Kimbell loved her messages tonight, she always does but right now they are even better.

Love,
Paige

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Posted Mar 9, 2009 10:08pm

We are EXHAUSTED! So we started this morning and wow it was interesting. We didn’t like our hotel so we checked out, not realizing that to get into NIH we would have to have ALL of our bags screened. Needless to say that made us 10 minutes late to a room full of doctors waiting on us. Has that ever happened to you in clinic? That was a shocker. Grandma, John, Kimbell and I spent the entire morning going through history and physicals. They took a nice chunk of skin out of me for a living cell line and showed me some of our test results from tests run prior to arriving. Interesting to say the least.

Kimbell and I then went to the eye doctors for the next 4 hours. That was not fun, I was amazed, with everything Kimbell does at the hospital that this scared the living day lights out of her. She was so upset with the eye drops, it never occured to me that it would upset her. Grandma and dad did their pulmonology testing and a 6 minute walk.

So on a funny note, I’m 5 pounds heavier then I thought (ok so that’s not funny) BUT I grew an inch! John also apparently set a record for the numbers of meters walked in 6 minutes… So maybe when you don’t eat breakfast, or lunch until dinner time sutpid things become quite humorous.

Now we are off to sleep to start our morning at 5:30 am.

Thank you everyone for all of your prayers, they worked. I’m feeling a thousand times better and most importantly we made it.

Paige

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Posted Mar 3, 2009 10:17am

Kimbell was back in the ER this weekend, she just can’t seem to get well. It has been a long 6 weeks of being sick! We got to see one of her hems this week to see if she needs additional IV antibiotics to get rid of the crud. I guess she has gotten even with her dad and I as we are all now sick as dogs! Her hemoglobin dropped again but not too much so that is good.

We leave this weekend to meet Dr. Blanche Alter and Dr. Sharon Savage at NIH. Please pray that we will all be feeling better or it will be a really long week. We arrive on Sunday and will spend all week at the NIH hospital running tests and then depart on Saturday. The doctors at NIH are on the cutting edge of bone marrow failure syndromes so this is really a great thing.

On a really good note we finally figured out why Kimbell’s port was hurting when they accessed it and so she is once again thrilled with her port. They drew blood and gave her antibiotics through it this weekend and it didn’t hurt at all! She was so excited. She even went so far to tell me that I needed a port and medicine through it so I felt better too!

I’ll be updating as we run our tests and get news next week.

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Posted Feb 19, 2009 10:30pm

Today we had IVIG and did our routine CBC. Kimbell’s hemoglobin finally stopped dropping and even went up a little bit. Her platelets have also rebounded. Thank you Lord!!! This is great news as her doctor has been concerned her marrow is just wearing out.

Thanks everyone for the prayers!

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Posted Feb 17, 2009 2:26pm

This saturday in Seattle we are doing a fundraiser for Camp Sunshine so for anyone in the Seattle area…. If you are too chicken to plunge well Kimbell will gladly push you in. She keeps asking how much longer until she can push her dad and Kristen (friend who was a volunteer at camp) into the lake. She is so excited!!! anyhow information is at http://www.freezinforareason.com/event/event.php?event_id=57

On another good note, Kimbell has a new baby cousin. She is so thrilled, well actually she is quite mad at me right now because we aren’t in Houston with her new cousin sister as she calls her. My sister had a baby girl Jasmine last night, both mom and baby are doing well. Chole if I’m spelling Jasmine wrong, sorry… hopefully you are sleeping!

We fly up to Seattle tomorrow for the fundraiser and for day clinic on Thursday. Hopefully Kimbell’s counts have stabilized.

Thanks for all your support.

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Posted Feb 10, 2009 11:11am

I’m so sorry I haven’t been writing everyone back, we have had a rough week around here. Kimbell spiked a huge fever this weekend so we were in the hospital getting IV antibiotics. Her counts are continuing to fall so we are monitoring her more closely as it could be whatever is causing this fever or her marrow just weakening. The verdict on when we go to Cinci is still up in the air, we are scheduled for the week of July 13th but it is largely dependent on what her counts do. Other than her just not feeling well things are going pretty well. I hope everyone has a great week, Kimbell is so excited about the Valentine card exchange at school 🙂 oh and making daddy a cake… Thanks for the support and I promise I will catch up on my e-mail 🙂

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Posted Jan 28, 2009 5:40pm

So the last report we were waiting on didn’t come. Her bone marrow cells didn’t grow so we were unable to obtain cytogenetics results. We still aren’t sure when we are going back for her next BMB. One doctor says 6 months another says that is too long. What we do know is that NIH rescheduled us to March 9th so we will be there then. As for her pathology report it was ok, not great not good. Tonight we are going to the rodeo and she is so excited. Hope you are all well.

Paige

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Posted Jan 17, 2009 9:07am

Well we don’t have final results but we do have some. K’s neuropsych appt went awesome and was very comforting as we had no idea if the disease was affecting her cognitive ability, it’s not. GI had some ideas to address her GI issues so we are following up on those. The not good news but not horrible news is Kimbell has a 20q deteltion/clone. We are still waiting on additional results from the bone marrow studies, if everything else is ok we will go back in 6 months; however, if anything else shows up we will be back in Cinci sooner then that.

Thanks,
Paige

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Posted Jan 12, 2009 6:28pm

Day 3 is done and one more to go. Yay. Kimbell is in the room watching Wall-E, she said she needed some down time and alone time. Hard to believe she is only 4.5 years old. Today we saw Dr. Harris, and neurology. She also had her BMB/BMA and we accessed the port for the first time. She did awesome as always, she continues to amaze me every day. Tomorrow we will have prelim results, her ultrasound, GI, Endo, and neuropsych. Another full day.

On an awesome note our hotel is taking the most amazing care of us. Kimbell came “home” today to a HUGE bear in her room. We love our hotel. They have the most amazing staff that make our lives so much easier. One of them was even nominated and won an award from the city council for his generosity to an out of state Children’s patient!

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Posted Jan 4, 2009 9:43am

Hi everyone,

Wow how time flies today we are packing to leave to see Dr. Harris and all of the other specialists. John leavese for Seattle in the morning and then on Thursday we will meet him in Chicago on the way to Cincinnati. Kimbell’s test start on Friday, BMB on Monday, and then GI and further tests on Tuesday. I’ll post as we get results in but if all goes well we will leave for Fort Worth on Wednesday.

Kimbell is super excited because she gets to go swimming at the Marriott 🙂 and she is going to get to see her friend Megan from Camp Sunshine. I’m so happy she now has a true friend she can visit with when we got for her workups in Cinci. What a blessing!

Have a great weekend.

Paige

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Posted Dec 31, 2008 8:36pm

Sorry it took so long to update it has been an extremely long day. We left for the hospital at 5 am this morning. We had a great anesthesiologist which was awesome and she took good care of Kimbell so that was a huge relief. Kimbell woke up in quite a bit of pain so they gave her 2 doses of demerol and then later we had to give her lortab. She isn’t too happy about the port, not in the best location and she said she can feel it going up and down her ribs 🙁 but this will be the best solution long term. Thank you everyone for the prayers. Please pray the pain subsides and we don’t have to bother the surgeon on call.

Happy New Year’s!!!

Merry Christmas

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Posted Dec 25, 2008 6:22pm

I hope everyone is having a wonderful Christmas. We certainly did. Kimbell woke up bright and early feeling wonderful. Thank you Lord, this is the first day in a long time she has felt this good and no tummy pain. She received entirely too many gifts and had a blast with every single one of them!

We received Kimbell’s egd and ph probe results on Christmas Eve but am quite frustrated. Our GI has given up as they were normal and referred us back to our hem…. Aggravating to say the least. On Monday we made the decision to put in a port to give Kimbell some relief from the pain she has from the IV’s when she has procedures and IVIG. Kimbell is scheduled to go into surgery on New Year’s Eve. Additionally we found out that the National Institute of Health/National Cancer Institue has asked our family to come up at the end of February to study us and maybe provide answers. These people do the most research and are our best hope for a cure so this was exciting as well as a reality check for us all.

Hug the little ones extra tight today, they are our miracles!

Love,
Kimbell, Paige and John

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Posted Dec 11, 2008 7:25pm

Thank you all for your prayers, we can’t do it without all of you. So well it was interesting yesterday. Mommy I can’t drink anymore (barium) I hurt mommy I hurt. Her poor tummy was hard as rock, literally. She kept telling them no more and they showed her the ng tube. Well she told them she hurt and then the projectile vomit came! Oh I’d say about 3 or 4 feet! All over all of us. “I told you my tummy hurts!” The radiologist backed off and no more barium for Kimbell!

So… she is on an adult dosage of prevacid and apparently she is still refluxing on her meds so they want her scoped next week along with another PH probe. The reflux could also be causing it to hurt when she breathes. She is such a trooper it is amazing, we went to get her blood today for the last bacteria phage draw for phase 1. We leave Monday for Seattle, Tues she gets infused for bacteria phage, Wed we fly back and Thursday she will have the EGD and ph probe inserted. They will remove the probe Friday and God willing she will make it to her Christmas concert that night and sing her heart out 🙂 Monday she gets her IVIG and Thursday is Christmas! She is a busy little girl.

Thank you all!!! We love you!

Prayers Please 🙂

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Posted Dec 10, 2008 12:38am

Kimbell hasn’t been feeling well for the last month but never says a word. The other day she told John that her whole body hurt. She’s been sleeping 15+ hour days a couple of days in the last week so that is never a good sign. The other night she woke up screaming in pain and then in the morning said her tummy hurt. It is extremely distended so we are going back on an antibiotic we were on earlier in the year to see if it helps. They are also doing a small bowel series follow through so please pray Kimbell will drink the yucky stuff and it will go quickly :)Please also pray that we find the root of her pain, she doesn’t comlain much but when she does we ultimately find something. Her counts are down so we are having to increase her neupogen which is never a good sign, we already doubled it this year in May and she has only gained one kilo. Her counts are lower now then they were in May when we increased it. So hospital tomorrow, then Monday we leave for Seattle Children’s for her bacteria phage infusion and then the next week on Christmas Eve she gets IVIG! We will be at CCHMC for her 6 month workup along with some new doctors due to the new dx January 8-13th.

Thanks so much everyone!!!

Update

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Posted Nov 24, 2008 11:53am

I am so sorry it has been so long since we have updated, life has been insane. Kimbell is doing ok. We recently changed insurance and have been fighting to get all of Kimbell’s treatments covered which hasn’t been easy to say the least. The good news is that they have finally agreed to cover her treatment for the next 11 months before they start fighting again!

In October we saw a new Immunologist at Seattle Children’s who had some interesting ideas and wanted to do a more thorough workup on Kimbell’s immune system. Currently Kimbell is going through testing that takes 10 weeks to complete to test her b cell functionality, if the test comes out as expected we will understand why she reacts to viruses the way she does. It requires two IV infusions and weekly blood draws but she is being a trooper as always. One of the common threads with DC is a motility issue of the GI tract, we saw GI last week and they are treating her for it so hopefully it will get better soon as it does cause her pain.

On an amazing note we went to Walt Disney World and had the time of our lives. Kimbell has what I call her Fairy Godmother she is so amazing. Anyhow she made our trip magical and Kimbell got one on one time with Mickey, the Little Einsteins, Handy Manny, Frozone and Mr. Incredible!! We also went to Mickey’s Not So Scary Halloween which was spectacular. We had so much fun it truly was amazing.

I hope everyone has a wonderful Thanksgiving!

Diagnosis

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Posted Sep 5, 2008 5:33pm

We have waited 4 years for a diagnosis, four very long years of praying that we truly understood what was wrong with our little girl and today I almost wish I didn’t know. Granted I still need to email Dr. H and our local hem but I doubt they will differ in their opinion as the results were “compelling.” My best piece of advice is that for those who fit in the SDS like category or no category at all is that eventually you will find an answer if you are diligent enough and more importantly wait long enough but be prepared. So what’s the news….

It appears that our little girl has dyskeratosis congenita which is a cousin IBMFS to Fanconi’s. It is an issue with telomere length, as you get older it shortens, turns out that Kimbell’s is “extremely short” in every single cell line which is overly compelling evidence of the disease. The worst part of this is that I think I always thought BMT would cure her and now there is no cure. She will still most likely go to BMT. After BMT we get to watch her closely by a large team of specialist because of the high risk of solid tumors that if found quickly enough can be treated. So for now we are being referred to immunology, an oral surgeon dentist who specializes in something, a pulmonologist, a new GI who specalizes in IBMF and I don’t remember who else. I suppose in some ways not everything has changed but for some reason it feels like my world was just turned upside down. Bottom line is this is extremely rare (1 in a million with 75% being male so for a girl 1 in 4 million) and they don’t understand it at all, not even the inheritance pattern. It causes multi system problems some of which they don’t even know what to do with or how to treat.

Thanks for the continued thoughts and prayers.

HAPPY BIRTHDAY KIMBELL!!!

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Posted Aug 19, 2008 11:07pm

Today is Kimbell’s 4th birthday, many times we never thought we would see this day so we thank God for it!! We are so blessed to have her with us. Today she had princess cake, a nice dinner where she learned how to use chop sticks, rides at the fare and the children’s museum. We had a wonderful time.

On a sorrowful note we said goodbye to one of our SDS friends, Dan today. He passed away due to complications from his BMT. Once again reminding us how truly precious our children’s lives are. Please pray for his family through this most difficult time.

All our love,

Paige, John and Kimbell

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Posted Aug 17, 2008 12:06pm

Hello,

Well Kimbell’s surgery went well and her CT scan was normal! We saw the new hem today at Seattle Children’s and we really liked her. We are going to start infusions here the first week of September so we will see how that goes. Hopefully better then her last one in Dallas. She didn’t react well during the infusion or afterwards which was disappointing.

For those of you contemplating getting a second opinion from the hem up here I was very impressed. She was extremely thorough and had some new ideas which we should have some test results after Labor Day.

Kimbell is holding up pretty well right now and her main priority in life is “Mommy how many more days until my birthday?” She is also obsessed with a montage my friend made of Camp Sunshine so at this point I think we have watched it over 30 times in a 48 hour period! If you want to see it here is the link http://www.onetruemedia.com/otm_site/view_shared?p=6aecd780d6fc7500551581&skin_id=601&utm_source=otm&utm_medium=email What an awesome week we had with all of our good friends. Thanks so much Deana!

Hope everyone is doing well.

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Posted Jul 30, 2008 9:47am

Hi everyone.

We just got back from Camp Sunshine and it was awesome. Kimbell is doing ok. She broke her arm the day after we got back 🙁 but she is a trooper. Kimbell is going in tomorrow to have her nose cauterized, no big deal but she has to be sedated, and then Friday she will have to be sedated again for a CT scan of her abdomen due to the pain she is having. Please pray that the CT scan shows why her tummy hurts so much. Even with a broken arm she didn’t want any meds but she does with her tummy… That’s about all around here. Also please pray for our friend Dan, he is post BMT and has been in PICU for a long time. Hope you are all doing well!

Paige

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Posted Jul 1, 2008 12:01pm

I wanted to update as we were supposed to have Kimbell’s scopes done today. Kimbell ended up having some complications from her surgery most likely do to her bone marrow issues. Anyhow she ended up with ulcers at the back of her throat and down her esophagus. She is doing much better now and she is elated as she can eat again and can finally drink something other than water. She continues to amaze me, she lost quite a bit of weight through this ordeal but continues to take everything in and go on. GI canceled her procedures for at least 4 weeks to let her heal. We increased her neupogen again and that seems to have helped her recovery. Please continue to pray for her healing from this surgery, it has been extremely painful and she is still hurting.

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Posted Jun 19, 2008 5:04pm

Sorry we haven’t updated. This week wore us out. We finally broke out of jail 🙂 They tried to discharge us w/o abx, and she still isn’t eating or drinking… We are doing everything to bribe her so that we don’t end up back in the hospital Her fever spiked last night so we are just hoping it isn’t getting infected.

The MRI/MRA was clear! We did a metabolic workup today and that will take a while to get back. There are multiple things that could be causing Kimbell’s speech issues so we will have additional testing as we start getting results in.

Drum roll… Kimbell’s BMB was as normal as it gets – well for a kid ilke her. No hemaphagocytosis!!!! FISH was normal, no dysplasia, cellularity was fair. This is just AWESOME news.

Thank you LORD! Thank you everyone for your prayers this is just amazing.

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Posted Jun 16, 2008 6:11pm

Hurray!!! The surgery was successful. Dr. Rutter couldn’t see it but he could feel it. Now that is a great surgeon. It was consistent with a thyroglossal duct cyst but was sent to pathology anyhow. Kimbell is finally up and doing much better, thanks to some good drugs. We saw Dr. Harris and they decided to bump her MRA up to tomorrow so hopefully we will get answers sooner then later. Just wanted everyone to know that everything went perfectly!

Thank you so much for all of your prayers!

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Posted Jun 14, 2008 8:30am

We are leaving Sesame Place today 🙁 to go to Cinci. Kimbell had the most amazing time with Elmo, Zoe, Abby Cadabby and on. She told Cookie Monster she was eating all his cookies! I’m glad she was able to thoroughly enjoy herself.

Our schedule for Cinci is as follows:
Monday: 7 am Surgery, she goes in the OR at 8:30 to remove the lesion/cyst and do her bone marrow biopsy. If the surgery is successful she will be admitted.
Tuesday: Neuro consult, Dr. Harris, and IVIG infusion
Wednesday: MRA of the neck

Please say lots of prayers the cyst has to come out, it grows and shrinks constantly and they can turn malignant so she will continue to have to undergo this surgery until it is successful.

Thanks for everything! Kimbell loves her messages!

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Posted Jun 6, 2008 10:24am

Hi everyone,

We are getting ready to leave to go see grandma in Highlands, NC before we go to Cincinnati for surgery. We will be in Cinci on the 14th, and have surgery to remove a lesion on the 16th. Kimbell will be having her bone marrow biopsy at the same time. Neurology has ordered an MRA of her neck as they think there is something compressing the 12th nerve causing speech problems. We got some not so good news yesterday that her IBD 7 Serology came back consistent with Chron’s disease so the team in Cincinatti is trying to fit in an EGD and colonoscopy as well. I’ll update once we get to Cincinnati and start our week. Thanks for the prayers everyone.

 

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