Day +110

I really need to stop getting excited by "good" days. Seems like there is always something harder around the corner. Livi has been getting feeds the last few days to try to get stomach to work. Instead it was just making her throwup over and over. SO they stopped them. Her stomach may be parallized by the one chemo drug (should go away with time) or some other med is causing the problems. Regardless she will be getting an NJ tube. Her NG tube will be removed and a new tube that completely passes her stomach and goes to the top of the intestines will be placed. She will have to be under anesthesia for it because they will need to us some machine to watch and make sure the placement is right.

Also her IGM and EBV levels have started to rise again which means this is most definelty a full blown lymphoma. Or doc will be researching the correct chemo to take care of it. This is the beginning of yet another battle we didn't want to face. Lymphoma is a hard cancer to fight.

Day +108

Livi is so glad to have the pherisis cathedar out of her leg. She was sitting up within 15 mins of coming out of anesthesia. It has made such a huge difference to her mood too. She constantly wants to do stickers and is making jokes. It is so good for all of us to see her happy. I will get a photo later today because with the steriod taper she is starting to look more and more like Livi! Her eyes are clearer than they have been in months.

The CT showed NO blockage, no swelling and smaller lymph nodes... All really good things. there is fluid in the coils of her intestines which could be just from the slow motility, C-Dif or GVHD. So far the C-Dif tests are all negative and her stooling hasn't increased so we are hopeful it isn't GVHD (pray hard it isn't...another flair would be fatal) Her stomach appeared smaller than it should be and could be a result of all the anti-nausea meds she is on. So we are trying to cut them out and add feeds. This will mean more throwing up for a while but could help to kick her stomach into gear. She really needs healing in her stomach. She hasn't actually eaten anything in probably about 6 weeks. I can't imagine not using your belly for that long.

Livi has started to play possum when someone talks to her. She closes her eyes and sits there until they go away. She sometimes peeks out just a bit to make sure they are gone then gets right back to her day. It is so silly. We all love that she is playing and doing new things to make us laugh. She even did it to Pa when he got back from Indiana yesterday. It only lasted about 2 seconds with him though.

James is feeling better. He still isn't going into the room with her because her WBC's are so low from the chemo. Oh her RBC's came up a bit on their own. We were expecting a transfusion today but won't need it since her marrow is starting to make cells again. Also her WBC's are slightly increased.

All in all most of the news was good. We needed some good news. I am not getting overly excited because I"m always nervous of the next hurdle but I am so thankful that God gave us some good news right when we needed it.

We are also excited because our little friend Jackson comes back today. Not excited that he needs to come back but selfishly excited to see him again. He has 2 more rounds of chemo both of which are tough. Please include him in your prayers as the next few weeks go by. He is tough and has done a great job so far. We expect nothing less from this round.

Thanks to my Uncle Rob (Livi's GUR...Great Uncle Rob) for the stickers. She used all the fuzzy ones already. Love you

Day +106

Tomorrow Livi will have pherisis in the morning (unless by a miracle her IGM is low) and then have a CT scan, her NG tube replaced (while under anesthesia) and have her pherisis cathedar removed. The thought is that they will remove it and then if she needs more pherisis put a new one in her other leg. The cathedar usually remains in for a week, she has had hers for 2. So it needs to come out before it gets infected. Pray we don't have to get another one, that we get that miracle and the IGM stays low. Also pray that her WBC's start to rebound from the chemo. She is getting GCFS to boost her WBC's every day now. They are very low (1.7) and the chemo is affective for 10 days after it is given (Tomorrow is 10 days).

Thanks to
Uncle John for the stickers and card
Uncle Andrew for the stickers
The Privitera's for the yummy chocolate
Sonya and Hollis for taking are of business.

Day +105

Alivia will get pherisis AGAIN today. Her IGM more than doubled since yesterday. She only slept about 2 hours last night due to belly pain and gas. It was so hard to watch. If she continues we will have a CT on monday to rule out a hematoma in her intestines from the endoscopy. During the anesthesia they will also pull her pherisis cathedar. It can only be in a week and Alivia's has been in for almost 2. Then she will have another one placed in the other leg.

She has been puking and going to the bathroom over and over. It seemes as if we take one small step forward only to come falling backwards. I'm tired, Livi is tired, James is tired (and sick at home this weekened). We could use some good news, some relief.

Day +103

PTLD is a rollercoaster. It is never the same from case to case. Ours is all over the place. Some days the numbers look encouraging (in fact one day they were all but normal...unfortunetly that was an error on the labs part). Yesterday her IGM was down even more than right after the pherisis on tuesday. That was encouraging but then today it was double Wednesdy's number. What to think I dont' know. It may be another error. Regardless they always assume a number that is very bad is true and often question a number that is good. So she got pherisis again. It went fine. We are praying that tomorrow and Saturday's IGM and Viscosity numbers are stable or lower so that she can get the cathader out. It is a direct line for infection. She currently has both a Gram + and Gram - infection so we need to get that line out ASAP. It is all a matter of weighing what is better...get the line out to keep infection at bay but risk not being able to pherisis if the numbers get bad again. They don't want to put in another line so they will keep this one till they dont' need it anymore. All in all a crazy balancing act.

She is on 3 new antibiotics and they are making her nauseous. She has throw up for the first time in a while today. It is so hard because she can't sit up because of the pherisis cathedar.


Thanks to Andrew for the post card, the Bookers for the great burgers and Jake for being hilariously fun. We miss you already

Day +101

We are past 100 days post transplant. Crazy. That is supposed to be a huge marker for whether or not the graft worked. Obviously it did but that is not the problem anymore.

The chemo didn't do what the expected. We are still hopeful that it will start to work. But her Viscosity was very high today and her IGM went up quite a bit in the last few days. It is over 8000 now. She had pherisis again today. Usually they don't leave pherisis catheders in for longer than a week because the risk of infection increases each extra day so that is another new concern. After todays pherisis I helped the pherisis nurse change the dressing on the entrance site. WE got Livi some morphine beforehand cause the whole area is sore.

Yesterday my dad and I (and a friend) went to the funeral for Katie Mae. It was all in German. I didn't understand 99% (there was an english word every once in a while) but I understood the heart behind it and the feeling. It was extremely peaceful and I felt it was beautiful. It was hard to be a funeral for someone who had passed away from the same treatment that Alivia is getting. I know Katie's leukemia was a different kind but it is still hard to see a transplant fail. I feel for the family. They are such a sweet, kind, positive family and I will miss seeing them each day.

I know God is able to do miracles. I know that Livi could be healed tomorrow and that is my prayer. It is so hard to watch her suffer day after day. It is hard to get the numbers back each day and have them be worse than the day before. I hate that she knows what each and ever beep means, she looks at me through tears sometimes and says "no hurt" and it rips my heart out. THis miracle is taking a long long time.

Thank you for the stickers from..
The Regiembal family...miss you guys
Gordon Stolzfus
Ang and Scott
Monica Coffey
Matt and Monjet Haughery (and cutie boys)
Jeff and Sue Anderson
Jeremy and April Stolzfus (Lane and Ava too)
Mike Gerhard and coworkers
Briand and Holly Wadding
Lisa Evans

Thanks to
the Pete's for the generous gift
the Parrow's for the Lowe's gift card
The Camp's for the cute Elmo shirt,doll and tissues and for the starbuck's cards
Georgann Kachur for the book and coloring book.

We are blessed by each and ever single peice of mail we get!

To my 2 favorite Dads

Happy Father's day. I wanted to take this opportunity to thank my 2 favorite dad's

1st to my dad. Your wisdom and guidance has made me who I am today. You are a servant always. I am amazed daily by the way you lay down your life for "your girls". Livi is blessed to have you as her "Pa", her little face lights up when you walk in the room. I would not be able to go through all this without you here with us. Thank you for putting up with me when I'm grouchy, for reassuring me when I'm scared, for loving Livi, James and I so deeply. Your faith is evident in everything you do and you are such a Godly example to me and others. Even though the circumstances are horrible you manage to make each day a little brighter for all of us. You are cheerful, kind, loving and encouraging. Thanks Daddy. I love you

2nd to my husband. I fell in love with you even more the first time I saw you hold Alivia. There is a sparkle in your eye when you look at her and you are a tender, caring father. Thank you for serving Livi and I throughout this whole ordeal (and before). Thank you for working so hard to make our lives and our home more comfortable. Thank you for being so strong and steadfast in your faith. Thank you for striving to lead us well through this situation and our lives. I know this is not what we expected or dreamed but you are such a rock and are getting us through this. Thanks James. Livi and I love you more there are words to express.

I feel so blessed to have these amazing, Godly men in my life.

Day +98

The chemo went fine. It is always uneventful during the actual infusion. She had chemo from 9-10 then a platelet transfusion from 10-11 then rituxin from 11-9 last night. It was a long day. She always starts to throw up about 24 hours after the rituxin starts. today was no exception. it is so hard with the pherisis catheder in to get her into a position where she can throw up. We didn't do a very good job the first time. hopefully all the anti-nausea meds will help there not to be a second time. Unfortunetly her IGM level still went up even though she had chemo so she has to keep the pherisis cathedar in and might have pherisis again tomorrow. Chemo takes a few days to really start to work for we'll see then if it is going to kill this secondary cancer.

Two days ago our dear Amish friends came back to the hospital late at night. Their daughter Katie Mae was too uncomfortable and couldn't keep oral pain meds down anymore. Katie Mae always hated the hospital and never wanted to come in so they knew she really must have felt bad when she asked to come. So they brought her in for IV morphine to keep her comfortable. They kept her as pain free as they could and this morning around 7:30 she went to be with the Lord. For her transplant she was in the room next to us and would always worry when she heard Alivia cry. She would want her mom to make sure Alivia was okay. We are blessed to have meet them and our lives are richer from their friendship. I am so sad for them. Pray for comfort, peace and grace for their family during this time.

Day +96

I'm holding hands with livi as i try to type so there will be no capitalization. she had a fine day as far as days full of pherisis go. it took about an hour again with the same results as last time. it cut here igm level and viscosity by about half but since the levels rebounded in between pherisis it didn't change much..just made her more comfortable for the evening. tomorrow at 9 she will begin getting chemo again. this is something we dreaded. supposedly it is the same as an outpatient dose and the side affects should be minimual. but still...its chemo which is basically poison. she could get nausea, loss what little hair she has grown back, get mouth sores, higher risk of infection. she also gets rituxin. it is going to be a long busy day.


thanks to
marmie for the stickers and generous gift for gigi and i.
the beamesderfers for the cutest socks ever...everyone keeps commenting on how sweet they are
the kim's for the stickers
dishy for the yummy baked goods
the borghi's for the cookies
kelly tonkin for the stickers
april for the hilarious note and stickers
sonya and bekah for the fun

Day +94

The pherisis went fine. It took about an hour and she slept through most of it. The catheder is incredibly uncomfortable for her. She is always aware of it and screams if you get near it. She can't sit up until it comes out (she can only be at a 30 degree angle at most) she is just having a terrible time. She is getting antinausea meds around the clock so she doesn't throw up...mainly because the idea of trying to get her into a position where she can throw up without asperating is was too overwhelming for me. Now instead of being up all the time the meds knock her out a lot of the day. It is hard to watch either way...crabby or overly sleepy. I miss my Livi.

She may get a CT tomorrow and then Thursday will have pherisis again. After pheresis she will probably get chemo again. We were dreading this. Seems like each thing we dread ends up happening. Tomorrow they will check her IMG level to see if it has shot back up. That is what they were trying to get rid of with the pheresis. Tomorrow if the level has shot back up that means she has a secondary cancer. The only way to get it under control is to give chemo. Supposedly it would be a small dose that her marrow will handle well. Still it is terrifying to face chemo again. I keep waiting for the good news to come. We need a miracle so badly.

Day +93 part 2

Livi got her pheresis catheter placed this evening in the PICU. She did fine. It is not a good looking thing. It makes me very nervous. She can't sit up because it will crimp or kink or something. How to tell a 2 yr old she has to be laying down or at a 30 degree angle for a few days is...almost impossible. TOmorrow the official decision about pheresis will be made but it looks pretty certian that she will get it. The goal is to lower her IMG level and see what happens. If they number stays low that is good but if it shoots right back up then it means it is a true lymphoma and she will need more chemo. It is all very techincal and hard to truly explain. I'm not even going to try. Pray she gets better. Pray she doesn't need more chemo and that there are NO MORE complications.

Day +93

Livi's fever continues to go up. It hit 103 a little bit ago. There is a possibility that she will need pherisis (spelling might not be right) because her B cell are producing big sticky cells. IF that is the case she will go to the PICU to get the line placed and then have it done in our room. We are waiting for the test. Something needs to be done because she is not feeling well at all. She is breathing quickly and on a bigger dose of oxygen. Her stomach is big and she is super tired but too uncomfortable to sleep. Pray hard

Day +92

Last night and today were very long. Last night Alivia may have slept a total of 6 hours. It was an hour here and another 2 there. She slept the best when I stood beside her crib. She didn't even want me to sit in the chair by her. So I got less than 6 hours. She was up and fighting sleep from 6 am on. She only napped for a brief 45 min today and spent the rest of the day crying, throwing up or just feeling horrible. She had fevers on and off all day and now is finally asleep but needing oxygen. Probably all from the infection but she did have a chest and stomach x-ray to ensure that was all it was. A long day for everyone. Poor sweet pea just felt to bad to even sleep. We also found out that the doc that we don't particulary get along with is back on service tomorrow and will be on for 2 weeks. So we won't be going home anytime soon.

Pray that the infection gets under control quickly and that she is feeling much better. Pray that nothing new comes up. Pray that we are able to discern the reality in what the doc says (Since he always tends to say the absolute worse case senario and is never encouraging). Please pray that James is able to make huge headway on our screened porch. We want to get it done so that if we ever get out of here Livi will have somewhere to play outside. Without a miracle he won't be able to get it done before the end of the summer let alone by the time we get home (although at this rate it may be the end of the summer)

We've been here too long. It is wearing on all of us. Home for me seems like a dream. I know because of all the work I won't recognize it but I can't even imagine being out of here anymore.

May people have asked what they can do, what they can get for us. If you really want to get something for us get a gift card to Home Depot. That would be the biggest help. Of if you have amazing carpentry skills and want to donate some hours to our back porch that would the most helpful. Otherwise...Livi likes stickers. Especially foam stickers or glittery ones..or of course Seasame street.

Day +91

Livi was pretty crabby and out of sorts today. I started to be concerned because she felt warm to me. Usually her temp is anywhere from 96.5-98 (98.6 is normal) for her regular temps so if she even hits 98.6 she feels warm. So they took her temp and it was right around 99.5. Not something that they would usually react but I brought up the fact that for her that was actually a pretty good fever since she usually runs rather low. So they drew blood cultures and around 9 we found out they came back positive. She has another gram negative cocci infection in her blood. They are not sure of the specific infection yet but have already started her on antibiotics. She is still running a fever and just not feeling great. Pray that this infection was caught early and that she doesn't get worse. Pray she quickly responds to the meds and is on the mend once again. Poor sweet girl has been through more than enough.

Congrats to Matt, Viv, Nicholas and Hannah on the birth of Constance two days ago! Another Haughery baby girl.

Day +90

Today is 100 days in the hospital. Never expected to be here this long. The last few days have been uneventful. Just waiting for Livi to heal. They tapered the steriods again and now she gets them only twice a day. She is getting another dose of Rixutamab for her PTLD. Last night was a rough night and I"m not sure why. She was up from 12-2:45 crying. She finally fell asleep and slept till 7:15.

We have been practicing standing. She hates it but it getting stronger by the day. The goal is to get her to stand on her own (currently I sit right by here and she sits back on my legs frequently. Her legs buckle frequently so she is scared) by the middle of next week and then start working on taking steps again.

We got great news today. The tests came back from Seattle....completely negative!! Woo hoo. Alivia's GVHD is healed. What a blessing.

Thanks for cards from
Sue Forrey (all 3 of them)
Uncle Aaron
Great Granddad and Grandmom McClements
Maryann Kisic
Deb and Rick Gilgore
And the Sheffer's for the CD.

Thanks to Sonya, Erin, Beth and Mark for spending some QT with us. We love you dear friends. (and Kristi we missed you like crazy. Mark did a great job pretending to be you.)

Day +86

Today was a better day. Still nowhere near out of the woods but she seems to be a bit better. She is still not walking at all. In fact she is more and more afraid/unable to stand everyday. Her EBV (epstien bar) is lowering. That is a good sign for her PTLD. Unfortunetly, she is still pooping blood. The doc who did the endoscopy came to see her today and said she wasn't suprised that she was still bleeding internally due to the number of biopsies requested by the doc who ordered it. She said she actually did less than requested because it didnt' seem safe to do as many as he wanted. She is getting daily platelet transfusions and has gotten quite a few packed red cell transfusions. If you match her and have donated in the past and want to donate again now would be the time. Her White cell count is on the rise again. Hopefully it won't go much higher or they will have to start doing blood cutures again to see if she has an infection in her blood. We have still not recieved the results from Seattle about the GVHD. Even though they didn't see anything here that doesn't mean they won't find something in Seattle. They are the ones who found the GVHD last time. There was passing mention of GVHD of the skin again today.

There was some laughter today and a ton of art work. She is still loving stickers and we go through sheet after sheet each day. She gets it in her head who she wants to make a picture for and then we have to write the name of the person who it is for on the paper really big, then she proceeds to cover the name completely with stickers. It's sometimes hard to remember who the card is for but she always reminds me. Its the sweetest, cutest thing. Some people (like her "Da" get lots of cards) Lucky duck.

Jackson...our buddy down the hall got some good news today. He doesn't have fungus or mold in his lungs. Instead he has strep that spilled over into his lungs. He actually smiled when I saw him today. Yea for Jackson!!

Pray Livi's WBC's stop rising, that her internal bleeding stops, less need for transfusion, no GVHD anywhere!! Continued healing of the PTLD, strength to return to her so she could walk again.

Also please pray for the Amish family down the hall. They got terrible news today and are having to make tough decisions. We have grown to love them and are aching for them right now.

Thanks for the cards from...
Julie Garner
Barbara Meyers
Marmie (the best grandma a girl could ask for!!)
Jamie Sentz and the Summit Quest 4th floor
Sue Forrey
Tootie and Dick Yake
Mrs. Kachur (my high school English teacher...my favorite teacher in high school because she pushed me to work harder)
Lynn Bassler (also for the generous gift)
Beth Young (also for the gift certificate)
Maryann Plesnicher (for the generous gift also)

Carol for the purse for Livi and for taking such good care of Livi so I could relax and sleep.

Thanks to Erin, Sonya, Ang and Bri. You know I love you girls and it means so much when we spend time together.

And to my sweet hubby for the great date. Love you tons.

Day +85 by Gigi

Livi had herself a day today! Poor little girl, she has had almost 100 days so far. Some better than others as you know. Yesterday, her doctor said we just needed "to stay the course". (No, he didn't mention anything about a thousand points of light.) Today, Livi veered off course in a major way with a morning diaper which, as her nurse described, was "Livi lying in a pool of blood". Previously she had been having very dark stools, which is an indication of "old" or digested blood having passed through her intestines. As the doctor mentioned yesterday, that was "normal" after her procedures on Wednesday. "What you don't want is bright red blood", he said. Livi got it confused and did the opposite. Such a two year old. I am kidding of course, it was scary. This whole process has been scary. After each "crisis" we tend to let out our collective breaths and thank God. I want to be as intense in my thankfulness to God for these answered prayers as I am desperate in praying for the answer. And so I want to thank all you blogreaders for your faithfulness to pray for Livi and us. We all know we cannot make it through one day, let alone the last year+ without your prayers as well.

Day +85

Livi has been having some blood in her diaper since the endoscopy. It was old blood until this morning. Her diaper and pants had new blood all over. It was pretty scary to me (most blood I've ever seen outside a person). She will be getting platelets and possibly red blood cells. Her vitals are still stable. She is up playing with her daddy right now.

Pray that the platelets do the trick and she stops any residual bleeding from the endoscopy. This needs to resolve ASAP.