Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Wednesday, February 28, 2007

Day -9

I am going to start labeling the days as they do here in the hospital. Today we are at -9. You count down to transplant day which is day 0 then start counting plus days. It still feels a little unreal. She started the day at 8 am with the first dose of Busulfan (chemo). They took her blood pressure, listened to her heart, checked her O2 levels and took her temp and she slept through the whole thing. Funny she didn't sleep mich last night when it was just the two of us and it was quiet but here we were with docs and nurses and machines beeping and she slept right through it. Silly girl. Last night she was loaded up with a lot of meds to prevent seziures and so we didn't have a problem with that. So far so good. The Busulfan runs for 2 hours and then there is a 4 hour break then its on for 2 again (you get the idea) and that while happen for the next 4 days. So far no reactions, no drop in energy, no throwing up but its just day one. They say the first week is pretty anti-climatic and so far it has been. She is being entertained by quite a few of her most favorite people so she doesn't seem too bored yet. They say that her energy will be pretty low after the transplant but so far everytime they say she'll be tired she's been a wild child. We'll see.

I am excited to start getting pictures for the walls. Send them as hard copies not to my e-mail, then we can hang them up. If its e-mail we have no way of printing it here so Livi won't get to see it. There will also be a prize for the first person who sends us a picture. So far no mail but we are really looking forward to getting some. I will set up the program so I can upload pictures starting tomorrow so after tomorrow I will post a photo each day. Thanks for you prayers. I'll only write more tonight if there is something going on...hopefully you won't hear from me again tonight.

Tuesday, February 27, 2007

In our room

We spent about 6 hours in the transplant clinic (not our regular clinic but a little clinic on the 7th floor for transplant patients) getting IVIG and Pentamamin (IV antibiotic). It takes a while to get each of them (2 hours for the antibiotic and 4 for the IVIG with 15 min flushes in between and dose of benadryl before the IVIG that takes 15 min with a 15 min flush....you do the math). She did great. None of these are ones that we expected to have a problem with and she did great. We got into our room after all...there was some fear that we wouldn't get to go into our room cause there wasn't one available so there was talk about postponing another week...I told them I couldn't handle postponing. Either do it or cancel it no postponing. But thankfully a room opened up and we are now all settled into room 60 on the 7th floor. Here is our address....

Alivia Haughery
RM. 7260
500 University Drive
Hershey, PA 17033

Our day start tomorrow at 6 am with a weight and measure and vitals exam by the resident. Then at 8 we start the first dose of Busulfan (chemo). It runs every 6 hours and she will also be getting blood draws ever 15 min for the first few hours to see how her body processes the meds. These blood draws will be sent overnight to a special lab and the results will come in the AM. They will then know the perfect dose for her body. Seems crazy to give it without knowing the perfect dose but that's how it's done. She is happy so far only tears came when she had to take a new medicine (Dilantin) and it wasn't a flavor she liked so the nurse plugged her nose to get her to swallow it. Not a good time at all. We are going to try crushing the chewable type into cherry syrup the next time around cause it might not taste so foriegn. Pray that she will take it. Tomorrow could be a really hard time. Pray that she does well and that she doestn' get sick at all. People keep saying some kids "sail" through transplant...we want to be that family. Thats what I'm praying for.

On a lighter note just wanted to let everyone know that we talked about it today and we need some distraction so we are starting a competition. I asked for pictures yesterday well now we want to make it a little more exciting. Get creative... do something wild... take a picture of you with a gaggle of geese, a herd of sheep, wearing a ridiculous costume, doing a crazy stunt. The pictures will be judged by our elite panel (Me, Alivia, James, Pa, Gigi, Nan, De-dad and any Uncles that show up). There are three catagories....Wild Times (You and the animals), Incognito (costumes...the more pubic the location the more points will be awarded), and Antics (you hanging upside down from the top of a 40 story building....okay not that wild but you understand). We will start posting updates on the best photos of the day. And the winners will get some sort of something.... maybe a picture drawn by Miss Alivia or an autographed picture of her. So make sure your picture has the names of all involved and the address you want the prize sent to on the back. Also we will post the picture on the blog (if we can get writen consent from those involved). So start distracting. You can enter many times. Our walls are bare and boring and need some sprucing up. Get to it. Oh and Marmie just send a picture of you and Duffy...its bound to rank very high.

All Packed...I think

To say I've been putting this off till the last minute is an understatement. I knew that writing this blog entry would be the last thing I did before I went to bed and so I've been holding out. But not I'm all packed (how do you pack for 6 weeks of isolation with an almost 2 yr old?!) or as packed as I'm going to be. On top of packing I am tyring to get our home organized so that work can be done to it while we are gone. I washed every blanket, pillow, towel and stuffed animal we own. Our washer and dryer have been running constantly for the last week. We emptied closest, moved furniture, picked out carpet, tile, faucets, paint, furniture, mattresses and now there is nothing left to do but go to the hospital. Having so much to do was a great distraction for me. I like having lists and checking things off. I kept adding little things to the list as if that would keep tomorrow from happening. Now its here and I cant do a thing to stop it. All I can do is pray.
I won't have our address until tomorrow but if you want to send a card that would be nice. I would ask that you include a photo of yourself with an animal, in a crazy costume or doing something silly. These will be so much fun for Alivia (and me) and we will be decorating our walls with them. Also if you cough or sneeze while you are writing the card don't send it. If you lick the envelope by accident don't send it. I know its extreme but we don't want to take any chances at all. (our transplant nurse said the thing about coughing and sneezing). Also if you want to send a gift there are some pretty specific rules for these too.
-No stuffed animals
-If you can actually touch the toy through the wrapper (try me buttons) then she can't have it
-If you can smell the toy through holes in the wrapper (ie Strawberry Shortcake dolls) she can't have it.
-In other words if there are any kinds of holes or breaks in the wrapper then she can't have it.
I walked through a few toy stores and put together a list of possible toys she can have and would like...Disney Princess, Littlest Pet Shop, Pretty Pony (careful some of these have holes you can smell through), Disney Faires, Moonsand, Dora, PlayMobil, Boardbooks (books with paper pages aren't good cause we can't wipe them down), movies and Polly Pocket. You might be suprised by the toys she likes. She loves little peices, dolls who she can change, beads, and crafts. I have more than enough markers, crayons and coloring supplies and the hospital can supply more if we need them. Please dont' feel like you need to get her anything. We are probably going to donate a lot of the toys she gets or that we are taking to the hospital when we leave (if they will take them). But she will get 6 weeks of enjoyment out of them.
I wanted to thank everyone who commented on the blog my dad wrote yesterday (go read it if you didn't get a chance). It was so overwhelming and amazing to be able to stop my packing throughout the day and read words of encouragement from friends and strangers. You will never know how much it ment to me (and my family). Many times I have felt like I was writing this for just a few and its so nice to know that many are still praying for Alivia. And thanks to all the kids who are praying for Alivia. There is something so pure about a child praying for my child. I covet your prayers. Thanks to my dad for thinking to write this blog. Many times I have told him that its hard to write when I don't know who is reading but he always encourages me to keep writing. So thanks for saying what I couldn't expresss. I'm so glad you are here to walk inot that hospital tomorrow. I can't do it without you. Also I would like to thank my Uncle Rob for the super sweet card and the books. We put the books right into the stuff to take with us so Alivia hasn't gotten to see them yet. I am so excited to read them to her. We tell stories each night before she goes to bed and I think she will love Pooh Bear so much. You are so thoughtful. Love you. Thanks to Jill P. for the gift and card. We are buying a ton of supplies for the house renovations and this will help so much.
I want to keep writing so I can avoid sleep which takes me to tomorrow but I know I need it. So I'm going to go sleep in my big comfy bed which I will miss so much for the next 6 weeks. I will try to post a photo each day from the hospital but it might take me a bit to figure out.

Sunday, February 25, 2007

A request from "Pa"

If you were to scroll down to the bottom of this page you would find a counter which shows, at this moment, 14,586 "hits". This suggests that a whole bunch of people are reading my daughter Emily's blog. I am sure by the time you read this entry there will be many more hits. This counter was placed there by Uncle Will just a few weeks ago. I had encouraged Emily to get a counter because, although we knew many people were following the lives of our precious Livi and her parents, I knew it would bless them to see just how many read it. It truly has been a blessing.
It would appear that the adventure that has been Alivia's illness will take a different turn this week. Admitting Alivia to the hospital for the bone marrow transplant is something we had hoped to avoid, but is now upon us. To say that there is no fear or trepidation would be a lie. However, we have an awesome God that sits on the throne of grace. He is sovereign and is committed to the bonds of love that are promised in His Word. In Him we trust, for He has nothing but good for us. There is no reason to think that his faithfulness will not continue to sustain us. If all goes well, Alivia will be in the hospital for 40 days (see Emily's entry titled "Eye exam" from Monday, February 19). During the many hospital visits Alivia has had during the last 11 months she, and we, have had the run of the entire hospital. We have made every hallway, lounge, playroom and cafeteria our home. The interfaith chapel is a wonderful place for Livi to toss pennies in the fountain. However, that will not be her experience this time. Alivia and her mommy will be confined to her hospital room with very few of us being able to be there with them.
Now to my request. I would like to encourage you to comment on Emily's blog. As encouraging as it is to see the number of hits, Emily, James and the rest of Haughery/Allen clan are encouraged by your words, even when it is a short "I am thinking and praying for you". Through your words we experience God's mercy, compassion, kindness, goodness, grace and love in a tangible way. You can express your thoughts, prayers, well wishes or whatever.
Some of you may be as technologically challenged as I am, (this is from a guy who still plays records on a turntable) but go ahead, give it a try. Some might say "I am a stranger, they don't know me". If you are reading this lengthy entry you obviously are interested in Alivia and her parents so you have every right to comment. You are fighting the good fight with us, and are no stranger. Some may say "I don't know what to say". Well, simply saying "I don't know what to say, but you are in my thoughts", will suffice. If this sounds like a plea from a loving father/grandfather it is. Please try to visit Emily through this "cool tool" she calls "Who's the cutest girl in the world". Most sincerely, Pa

Friday, February 23, 2007

Somebody got a haircut

Alivia's hair has been growing since she was born. I wanted her hair to be all one length and so for a while we were using ponytails or barrettes to keep her bangs out of her eyes. But with the transplant only days away I decided 2 things. 1. It will be so much easier to not have to deal with ponytails and barrettes (and chemo can make your scalp sensitive) 2. I wanted it to be my decision that her hair changed...not because of the chemo. So this morning Alivia got bangs. She looks cute and like the hair cut. As soon as I was done she kept pointing to the scissors and saying "mo, mo" (more). I think it make she look like such a big girl.

Saying Cheese.. In action....she was trying to run past me.

Tuesday, February 20, 2007


Today went great. Livi did such a good job. She wasn't even too fussy considering she couldn't eat any time after 6 am. There were a lot of distractions (in the form of grandparents). She had her IV antibiotic first and as soon as she got done with that we headed to the South OR. The procedure took about 25 min. IT took a bit for her too wake up but she woke and ate 8 oz of formula. All in all it was the best bone marrow biopsy we've had. And as always she is a wild women after. No nap or anything and she is running around being crazy. Anesthesia always makes her like this. We are so thankful for how today went. It's good be home and not have to go back for a few days.

We are often asked what we need, how can someone help. There are a ton of things people have done for us and we are so blessed. This week in clinic I was able to pick up some fliers for organizations set up to help kids with cancer and leukemia. Here are two websites. The first is for The Jared Box project. which gives containers full of toys to kids during chemo. The second is ConKerr Cancer which gives colorful pillow cases to kids. Both projects are easy and would be a great way to help.

I may blog 10 more times this week or none. I'm not sure. I know this is going to be a hard week. Today Alivia is 23 months old. In 7 days she will start her bone marrow transplant procedure. This wasn't what I expected for this time in her life. Pray that the next week is a really fun one for James, Alivia and I. We want to make the most of this week and not dwell on what is coming.

I know that many will want to buy Alivia a present while she is in the hospital. I will post a very detailed list of what is a good idea and what we won't be allowed to have.

Thanks to the Wheatland Presbyterian church 3rd and 4th grade sunday school class and all the others who sent cards from that church. Thanks to Marmie for yet another sweet card.

Monday, February 19, 2007

Eye Exam

Everything went fine today. It was a long day but nothing exciting happened (thats the way we like it). They eye exam actually wasn't that bad but the dilating of the pupils wasn't Alivia's favorite part (the drops sting) and her eyes will be dilated for a day or two. Crazy. We had her wear sunglasses all day to try to help. She looked super cute as always.

I wanted to share the treatment plan that we were given by the doctors. It is long and complicated but I thought if I just copy it word for word people would understand all the process a little better. So here goes.

"Your child was diagnosed with amyeloproliferative disorder.

Treatment plan.

Before your child undergoes a bone marrow transplant, many tests are done to assess your child's general health. These include functional tests of the heart (EKG and Echo), kidneys, liver, lungs, eye, hearing tests and blood tests to look for viruses. Your child must be free of any active infection before the transplant.

If these tests indicate that your chile's health is satisfactory for transplant, then he or she will be admitted to a private room ont he ONcology Unit. The preparation for transplant consists of two chemo drugs, busulfan and cyclophosphamide given over eight days. Busulfan is given by IV for times a day for four days. Cyclophosphamide is given by IV once a day for four days. The Ninth day is one of rest. On the tenth day the stem cells are given to your child through the central venous line.

Busulfan and cyclophosphamide both cause nausea, vomiting, hari loss, mouth sores, diarrhea and sterility. To prevent nausea and vomiting, we give the medicines that have worked best for your child in the past. Both drugs can cause seizures. We try to prevent seizures with the anit-sezure medicine dilantin. Both of these medications have a potential risk of causing acute myeloid leukemia. We estimate this risk to be about 5%. WE cannot prevent secondary leukemia, but we recognize thast the risk of death from secondary AML is substantially less than the risk od death from the leukemia your child has now.

In addition, busulfan can cause lung scarring. To prevent these complications from busulfan, we will obtain levels (blood draws) and adjust the dose to hopefully avoid excessive toxicity. Cyclophosphamide causes fluid retention and bleeding from the bladder which we attempt to prevent with the medicine called MESNA< a drug which combines with the breakdown products of cyclophosphamide in the bladder. Rarely, cyclophosphamide can cause heart damage.

Other risks of the bone marrow transplant include:
1. Infection. the immune system will be depressed for a vriable period of time, and the white blood cells that fight infeciton will be lacking until the graft "takes". Your child will receive intravenous gammaglobulin prior to the transplant and then monthly to help decrease the possibility of a serious viral infection. If your child should have a fever, IV antibiotics would be started. Usually, we are successful in treating the infecting with antibiotics, but infections can be life-threatening.
2. Bleeding, as the platelets which help blood clot may be low. Usually we are succesful in preventing major bleeding problems with tranfusion of platelets.
3. Venous Occlusive Disease (VOD): this can occure as a result of the chmoe. Symptoms include jaundice, with liver dysfuncthin, weight gain, and extra fluid in the abdominal cavity. It may often be managed successfully, and completely resolve. However, complications may arise that can be fatal.
4. Mucositis and diarrhea: the large dose of medicines cause erosioin in the lining of the mouth and intestines. THis can result in painful mouth sores and diarrhea. Pain medicine is genearlly required when mucosistis is severe. Mucositis gets better when the white blood count starts to rise and engraftment occurs.
5. Graft vs host disease (I wrote all about this on the other site so I am skipping this section)
6. Graft rejection: This may happen early or sometimes, the graft will be rejected after an initial period of acceptance. Graft rejection can be determeined by a bone marrow test. If this occurs another transplant is sometimes possible. As the preparation with high dose chemo will destroy your child's bone marrow, your child will not be able to make red blood cells, white blood cells, or platelets. There would be a greater risk of bleeding or infection.
7. Second Cancers. There is a very small risk of second cancers foloowing a bone marrow tranplant. This risk is felt to be outweighed by the risk of you child dying from complications of his/her primary disease.
8. Other late effects: bone marrow tranplantation may cause delayed damage to the heart, lungs, brain, liver, kidney, bones and ovaries."

See all the things my God is going to overcome? Won't we be so amazed by His goodness and might. I am excited for the day when I can look around and say "look at how far we have been carried"

Sunday, February 18, 2007

This week

We have a busy start to our week. Tomorrow we have an eye exam at 10 and then Livi gets an IV antibiotic that takes around an hour. Tuesday she has a bone marrow biopsy and gets the IV antibiotic again. Then hopefully the rest of the week will be visit free. It would be nice to have some time off and just get to be a family. I am most looking forward to some down time with James and Alivia. We haven't just hung out the three of us in a long time.

This weekend was nice. James and I got to hang out with some friends Friday. Saturday James and I went and picked out some things for the house (we're doing a lot of work while Alivia is in the hospital) while Alivia was napping. That night we had dinner at the Haughery's (Alivia had 5 uncles following her around...she was on cloud nine) Today my mom and I went shopping during Alivia's nap to get things we'll need for our hospital stay. And then tonight James went to church (they had it in the evening cause the building we use was rented to someone else) and then we had a meeting with our senior pastor (thanks Pete for being meeting with us. It is great to feel so cared for). Aaron went home on the train today and got home safely.

Thanks to Andy, Sonya, Josh and Bekah for the great time Friday. You make us laugh and we are blessed to have you as friends. Thanks to mom, dad, Andrew and Aaron for the constant Livi entertainment. She loves you guys so much and so do I. Thanks for the great dinner Cynthia and thanks Bill for having everyone share. That was so encouraging and kind. We are surrounded by a wonderful family. We most definetly couldn't do this without all of you. Thanks Phil for picking Aaron up...one less thing for my parents to worry about.

Please pray for tomorrow's eye exam...I'm not really sure how you do an eye exam on a 23 month old (she'll be 23 months old on Tuesday). Could be really easy or really hard. I have no idea what to expect. I dont' like days like that. Seems like there will be a lot of those coming up. I am a planner by nature and not knowing what to expect is really hard for me. Thankfully my God knows exactly what is coming and has planned my days. Otherwise where would I be?!

I am going to type out the "Treatment Plan" and post it in the next few days. It completely outlines what will be happening. Gotta get to bed.

Thursday, February 15, 2007

Side affects

Today we got to discuss with our transplant doc all the horrendous side affects that could happen with this transplant. Long, black hair like this is not one of them. But doesn't she look cute.

We had our official final consulation with our transplant doc today. I got to sign all the permission forms. And they went through every possibility of bad things that this transplant could bring. I know they have to tell all the possibilities (even the ones that are only for 1% of patients) but couldn't be just leave a few out. I know this is a dangerous process, I know it is not going to be fun but man is it overwhelming hearing all the side affects at once. My brain froze up about half way through. I didn't stop listening I just couldn't process anymore. I mean what am I supposed to say..."oh good to know" or "helpful..thanks" cause neither is true. It is wise to be prepared but my imagination is already hard enough to control without the words in bold print right in front of me. Then we got papers explaining it all again so we could come home and read them if we wanted. Yikes. After a while it becomes impossible to even think of Alivia and all the things they are saying. She is so happy and funny and amazing and how can even one of those things happen to her? I only teared up a few times (pretty proud of that) and mostly was able to keep it together. I would much rather cry at home.

Tomorrow Andrew flies in to visit for the weekend. My dad and Aaron come tomorrow night (my dad went home for a bit). The whole fam will be together again. I don't think we've spent this much time all together in years. Monday is the appointment with the eye doc ...the reason for this visit is to check where her eyes are now (base line) because some of the meds can cause cataracts so they need to see where her eyes are now to have something to compare to in the future (she will be checked every six months). Also Monday she will recieve some IV antibiotics. Tuesday is the bone marrow biopsy and the nasal wash and IV antibiotics again. Then hopefully we wont' have to go back till the following monday for more IV antibiotics. Then Tuesday is the day we are admitted. It's coming so fast. Please pray for peace. I am so scared.

Thanks to Rachel for being the best. Congrats to the Almengore's on their new little girl Isabella!

Tuesday, February 13, 2007

It's snowing

It has been snowing since I got up so they called and cancelled the consult with the transplant team today. Instead it will be on Thursday. My parents (who came for the meeting) are stranded here (oh how horrible) I think they are pretty happy to be "stranded". And Livi couldn't be more pleased. Her fan club is almost all here (just need Daddy, Nan (who was here earlier), De-Dad and some uncles and she would be on cloud nine). She is doing great and happy as can be.

I realized it would be even harder to go through all of this if she was aware of what was going on. If she knew what was ahead and could worry about it. I'm glad for her that she has no idea and it doesn't ruin her day.

Over the last few months I have spent quite a bit of time writing down medical information on our other blog. I would ask that everyone who reads this entry click here and read all of the medical info's I have written. It gives a much more clear idea of what the transplant is (NOT a surgery!) and what different terms mean. Once the transplant starts I will not be explaining what certian terms mean but just assuming everyone has read the other blog. Thanks for taking the time.

Thanks to everyone who sent Valentine's day cards to Alivia (Aunt Kathy, Marmie, Jim and Jean McClements, Maryann Kisic) and for all the great gifts (Sarah and the Pete's, Aunt Kathy, Ann B.) If I forgot to thank you it doesn't mean we didn't love it. Just a lot going on. So thanks. And thank you to the person who works with Vince F. at Donnely for the gift. I am often overwhelmed by the kindness of strangers. Thanks to Angie, Jamie and Kathy (you forgot the food) for all your help last night. I am so blessed with such wonderful friends. oh yea...Thanks in advance to Chris for picking my brother up from BWI on Friday. You are coming to our rescue once again.

Monday, February 12, 2007

Weekend and such

We had a great weekend with my family (extended and immediate). The Allen's...well the Allen's are the best. I can't explain it, you wouldn't understand unless you've gotten to spend time with them. They are just the best. Lots and lots of laughter which is just what the doctor ordered. I didn't have my camera so I don't have pictures...just the ones in my head.

We got home late last night and are trying to get our house back into some order. Not the most important thing right now to be honest.

We recieved the letter from our insurance saying we are approved for the transplant. That one slip of paper is worth probably close to a million dollars. Insane. I am definetly thankful for insurance we would be in a load of trouble without it. So I guess we're really doing this thing. crap.

Thursday, February 08, 2007

Long long long

Today was a long day. The Echo went fine. The counts were bad and the CT was supposed to start at 1 and didn't start till after 2:20. It was a day at the hospital as usual. I've realized there aren't really great hospital visits. There are okay visits but you're still in the hospital instead of somewhere fun...like home. Regardless we made it home, exhausted. Expect Alivia of course. They warned that she would be very tired and probably sleep a lot this evening. Besides the 15 min nap on the way home she is wide awake. I finally let her lay in her bed for a bit. I am drained. She's totally content to lay in bed for a bit and talk to her animals but I have a feeling I'll need to go get her any moment now.

Here WBC went up to 96 (from 54) her RBC's came down to 10.5 (from 11) and her platelets dropped the whole way to 86...yikes (from 240). Needless to say thats not good.

I need to get Alivia. But here is a little treat. Just click here to see a video of the girlie.

Wednesday, February 07, 2007

10 months ago

In less than 20 min it will be February 8th. That means that 10 months ago we started this journey. I can barely believe it. We were watching the Super Bowl Sunday and I commented to James that a year ago we had no idea Livi was sick and we were enjoying watching our team win the big game. Funny how I can't remember what that feels like. I can't remember what it feels like to have Alivia healthy. I dream about that day when she's not sick anymore and this is all a memory. Oh God when is that day? My prayers are so basic at this point. I have no fancy words. Just God heal my baby. Please God.

Tomorrow we head to HMC for a 9:30 EKG. Then we have a clinic visit at 11 and a CT Scan at 1. The CT is under anesthesia so please pray. We don't know how she'll handle it without the spleen...hopefully much better than with.

Each time I fall asleep all I can think is we're one day closer. One step closer to the scariest thing I can imagine. All I can do is pray.

Monday, February 05, 2007

Oh, Pa

In the Treehouse Feeding the pig some corn

Livi has been saying "oh, Pa" every since my dad left Sunday. She misses him dearly and wakes up from each nap and each morning calling for him. We had such a great time with him this weekend. James had to work on Saturday so Livi and I took Grandpa to the Hands-on-House (it was his first time) she showed him all around. Grandpa babysat Saturday night so James and I could go to dinner.
I know others think their dad is the best...but I would have to say they are wrong. My dad is the best by miles. Love you Daddy
We have a clinic visit Thursday then 2 doc appointments the next week and then hopefully only 2 the following. Then we enter the hospital for the transplant. It's coming faster than I would like. We are going to my parents this weekend as long as the weather cooperates ....Hopefully that will mean Marmie, Lisa, Pete and Maria (and some cousins if they want) will come visit. The weekend after my parents and Aaron are coming and Andrew is flying in again. Then I think we'll try to have one last weekend with friend before we enter the hospital.
Thanks for your continued prayers

Friday, February 02, 2007


Our visit to the clinic went fine. All of her counts stayed pretty much the same. The RBC's were the only ones to go up. The WBC's and platelets came down but not enough to change anything. Alivia got her IV antibiotic that she gets each month and got her dressing and caps changed (on her broviac). It went so much better than last week. The home nurse did it last week and Alivia was terrified and it definetly hurt her when the tape was removed (the nurse used alcohol to remove tape!! Ouch). This week it was Joanne who changed everything. Alivia knows and likes Joanne so she wasn't scared at all and Joanne didn't use alcohol to pull the tape off. She was patient and careful. Thanks Joanne.

We talked to our transplant doc and she gave us some dates....Yikes.
February 13th is the consult
February 19th is the eye exam
February 20th is another bone marrow biopsy and nasal wash
February 27th we go into the hospital for the transplant...unless the cord blood is coming from Europe then we will go in the following Tuesday.

Inbetween now and then we also will have an Echo, EKG and Chest CT along with our regular clinic visits. I personally thing spending 6-8 weeks there is more than enough time but obviously I am wrong.

On one hand its good to have a date so its not just looming out there in the unknown but on the other hand I was still holding onto the idea that if we never plan it something will happen and she won't have to have it. We could still get a miracle but I'm not sure thats what is going to happen. I still can't imagine actually walking into to the hospital with her as healthy as she is now and hooking her up to meds that might kill her. My brain doesn't work in that area.

I know that people are going to want to send cards and maybe gifts to Alivia when she in the hospital. That is great but there are some very clear rules on what kind of gifts she can have. With cards please don't lick them. I'm being overly cautious but its my baby and I want to do everything possible to keep her healthy. So use a little water. Second, no stuffed animals. We are allowed to take a few from our house (we have a million) but she can't have any others cause they hold onto germs. I will lay out the whole list in the coming weeks. Thanks everyone.