Day 11

Day 10 was a little more up and down than we would have liked. Her counts continued to go up yesterday, however her Broviac was still not operational. So the doctors decided to remove her line and place a new one. This was a little concerning to all of us as she was just getting her counts up. It meant leaving her isolation room to go into a procedure room and also of concern, her platelet counts were still quite low. Low platelets means the blood doesn't clot as well which isn't idea for a surgical procedure. The doctor assured us that they would transfuse platelets before the procedure and the risks of placing a new line were lower now that her counts were improving. She also needed a functioning line to give her both the meds and antibiotics that she needs while also providing her with her nutrients.

Everything went well with the procedure. However her blood pressure was lower than they would like so they had an x-ray of her chest taken and found that she had some sort of virus. They were able to rule out the flu so now we're testing for various other viruses she may have. The low blood pressure could also be a result of the use of anesthetics they used during her procedure.

Another problem now is that only one of her two new lines are functioning. We're hoping to get that one cleaned out and running today to avoid putting her through another IV insertion in her arm. The good news is that through all of this she is up, she is talking her daddy's ear off and watching her movies.

I met with the infectious disease doctor yesterday to go over my cold sores and exposure to Gavin's flu. She recommended that I could return to Greta's room with a mask as early as Sunday afternoon. That still has to pass Greta's transplant doctors authorization and he was thinking more like Wednesday. We're hoping for a happy medium. I was able to get a peek at Greta Friday after her procedure while Randy carried her past me on the way back to her room. It wasn't as much as I would like but it will have to do for now.

We're praying for a much calmer day today!
With Love,
The Betz Family

10 Days Down, 90 To Go

Greta's white blood count went up today! We're very very thrilled about that. We were told about 10 days for the stem cells to do their thing so she's right on schedule. The bad news is overnight her Broviac sprung a leak, so she has to have an IV put in her arm until the glue dries on her Broviac. She seems to be feeling better. Yesterday she spent most of the day still sitting on Grammy's lap watching her movies. But everyone who has seen her the last two days has noticed how much happier and upbeat she is.

We're dealing with our own disease control at home. Gavin's fevers continued Wednesday so we went back to the doctor and they tested him for influenza. The test came back positive so now the hospital is working on getting the rest of us some drugs to hopefully prevent the rest of us getting the flu as well. Since I've been exposed to Gavin the last four days, we're not sure when I'll be allowed back to visit. It has been a week since I last saw Greta. It's been quite hard to hear all the discomfort she's been going through and not being able to be the one to hold her. Meanwhile I've been trailing Gavin throughout the house and sanitizing everything he's touching.

We're all hanging in there, it's a long battle but well worth it. It could be just 90 days (or less)until Greta can return to normal activity. I can't imagine what it will be like to have quick hospital visits and to have Greta's Broviac removed. Spring has always been my favorite time of year, this year more than ever!


Thanks again to everyone who donated to help us have our house cleaned from top to bottom. It's a relief not to have to worry about that when Greta gets home. We are truly blessed with wonderful friends!

With love,
Kristi

Day 8 - Cleaning Day Part II

Today Guarantee Systems is going to be cleaning and hepa-vacumming all of the walls and window treatments, as well as disinfecting all hard surfaces at Greta's house. Tomorrow, Stanley Steemer will thoroughly clean out the furnace and all of the ductwork, and then steam clean all of the upholstery and carpet. We are so grateful to Greg at Stanley Steemer in Byron Center, and to Mark at Guarantee System in Grand Rapids for their generous contributions toward getting the house ready for Greta to come home.

Much thanks is due, as well, to Cornerstone Church in Caledonia, where the Betz family has been attending and who made a very generous donation to the house cleaning project. All of the help we are receiving is such a blessing during such a stressful time. I know that Greta and her entire family and circle of friends is immeasureably grateful to everyone who is giving of their time and resources.

Gavin has been battling an off-and-on headache and fever for a few days. Mommy is still banned from the hospital, so she has been on Gavin detail while Daddy, Grammy and Opa take turns staying with Greta. Greta has been much more low-key these past few days, prefering to sit quietly in their laps and watch DVDs more than anything else. Still not interested in eating or drinking, she's on an IV for nutrition and fluids, and mild pain meds for stomach cramping. She's been spiking a fever now and then, so as a precautionary measure she's constantly monitored by her doctors. Xrays and nasal swabs are testing clear for infections, so it may just be her normal response to chemo (she had fevers after her last few rounds prior to this most recent stay), but the doctors need to be extra vigilant to be sure. We're told she's reacting pretty much as they would expect.

She's still such a trooper, rarely complaining, just being her sweet self, though more quiet than usual. Any day now, she should start to bounce back, and we can't wait to see that sparkle again!

Love,
Aunt Kari

Day 6

We're getting into the days the doctor warned us about now. Greta is starting to get mouth sores and she's been getting some fevers too. They have given her some morphine now to help with any pain. It's a real small dose and it does seem to perk her up a little. She had gotten a platelet transfusion yesterday and will get another one tomorrow along with a blood transfusion. She still isn't interested in drinking or eating, but that is to be expected. The good news is that everyone tells us that Greta is doing as well as or better than most transplant patients do.

I am still fighting these cold sores and hope to get them healed up soon so I can get back into the rotation of day and night time visitors. Gavin spent the day home today with a small fever and some coughing so he is back on antibiotics and we're hoping the rest of us can avoid anything he may have. He asks about Greta every day and would love to have his little sister home to play with real soon. He has been a trooper through all of this too. We make sure to pray for her every night and if we forget, he reminds us to ask for good health for everyone!

Thank you for the continued prayers!

Love,
The Betz Family

Day 5

Hi everyone - thought I would take a quick moment to thank all of our volunteers who gave of their time and the their sanitizing wipes yesterday! With so many helpers it went really fast, now the house is almost ready for baby Greta to come home.

The floors should be finished tomorrow, and then on Wednesday and Thursday we have cleaning companies arranged to thoroughly clean Greta's house from top to bottom. This will give any remaining irritants a few days to settle before she comes home. Fingers crossed, that may be less than two weeks from now. She continues to amaze everyone with her sunny mood - who else would be this fun and silly after being cooped up for almost 2 weeks?

I've gotten to spend a lot of time with Gavin and my parents while they're here, and everyone is doing really well. It's a real bummer that Kristi has to stay away from the hospital, but of course we'll do what we need to if it keeps Greta healthy. Grammy and Opa have arranged to stay another day or two to help out while Kristi's benched. She can't wait to get back to her girl. Lucky Gavin gets to have some more time with Mommy, though :)

Thanks again to our helpers yesterday, and of course to all of you for your friendship & support.
She's a pretty big miracle for such a small girl :)

Love,
Kari

Day 4

Greta's counts have dropped very low today. So now we wait until they start to climb back up. I (Kristi) am not allowed to visit Greta right now. I came down with what appears to be cold sores which Greta is very susceptible to and can cause other infections. So until my labs come back to confirm what the sores are, I am to stay away. As you can imagine, it's the hardest thing to not be allowed to see Greta right now, especially during the days where she is at her lowest.

Greta is still doing great though. She is still playing, dancing and singing. The child life specialists have provided Greta with her own play kitchen and plates and dish set, so she is busy making dinner and pouring her guests drinks. Grammy is staying with Greta tonight so they will have their special sleep over party tonight. I'm sure there will be much spoiling!

Thanks to everyone who came over today to help sanitize all of our toys! It went so quickly with all the help. We really appreciate all the extra hands!

The Betz Family

Day 3

Greta's counts have gone down today. The doctor says the next few days may be her worst. So far, she's still doing pretty well. She doesn't have any mouth sores yet (which is a common concern). The sores can go down into the digestive tract, and they make eating more painful. Greta has pretty much stopped eating, but she's on IV nutrition so that isn't a concern right now. She'll have to get back to eating on her own before we'll be able to go home. All in all, the doctor seems pretty happy with where she is right now.

We've been in the hospital now for 11 days and it's going better than we had hoped. We all seem to be managing it pretty well. Gavin has asked about his sister every day, but he seems to be handling this all very well too. He seems to enjoy all the remodeling at home. He likes the jungle gym of furniture in the foyer and eating snacks on our bed as it is the only room with carpet and a TV right now. I am ready for the mess to be over with myself. I miss my washing machine most of all!

Thanks for all the support and the help, we couldn't do this without you.

Love,
The Betz Family

Day 1

Happy birthday Greta! This is Day 1 of Greta's road to recovery. They call it her second birthday. She did just as well today with her second infusion. She's still not eating a whole lot, so she's on IV nutrition to help keep her strength up.

The stem cells are kept in a preservative that make Greta (and the whole room) smell like cream corn. Kind of like a school lunch room. Fortunately it's starting to dissipate a little. So now we just wait until her counts drop and recover and try to keep her from getting any infections.

Greta has been amazing through all of this. I can't imagine many kids would put up with being isolated in a small hospital room for 9 days already. She rarely complains about much. We are so blessed that she is so content and accepting of the situation she has been put in. I think I could learn a few things from her!

Thank you again and again for all your prayers and all the support. We have been blessed with amazing friends and family. You'll never know how much it means to us.

love,
The Betz Family

Two Bags Done!

Greta had her first transplant and finished up a couple minutes ago. She'll get the last of the 3 bags tomorrow morning. Every thing went very well, she isn't have any reaction and actually slept through the whole thing. Praise God!

Day -1

Yesterday was a rest day for Greta. She is still in pretty good spirits, loves to dance to the Sponge Bob theme song. She now belts out the last "Square Pants" in the song. Love it! She didn't eat a whole lot, but she tends to slow down in that area during past chemo treatments so we aren't too worried just yet. Today she is resting watching more videos. Her red blood cell count is lower today so that may explain why she is a little more low key. She'll get a transfusion later tonight after her transplant.

The doctor informed us that he has decided to transplant 3 of the 4 bags of stem cells Greta had donated previously. We had only anticipated 1 bag being used, but he feels that using 3 will allow her to recover faster and that will leave us 1 bag if the transplant fails. We were a little apprehensive that we'd like to have all bags available in case of failure, but the doctor feels confident that the first will take and doesn't seem concerned in the least bit, so we are reassured with his knowledge and expertise. And having a faster recovery time appeals quite a bit. So she'll now get two infusions tomorrow and a 3rd infusion on Wednesday, which technically pushes her day zero back a day as well. In the scheme of 100 days, one more doesn't sound too terribly bad.

Greta's hair had started to grow back with the month off she had in December. She's got little fuzz all over the top of her head and her eyelashes were coming back too. It's so amazing to look at pictures of her when this all started 9 months ago. I hardly remember what she looked like with hair. So many changes.

On the home front, we have decided to take this opportunity while Greta is hospitalized to replace all the flooring in the kitchen and living room. This will take place on Wednesday, it's win/win I get all new hardwood floors and carpet and we have clean floors for Greta to play on when she returns. We'll also be hiring a cleaning company to clean the other carpets, furniture, window treatments, air ducts and pretty much everything so she'll be in a clean environment when she gets home.

Thanks for all the prayers today and all your notes of support!

Love,
The Betz Family

Day -3

Greta is all done with her first drug, she'll get one dose of her second drug today. Then we'll have 2 days off. She is still doing amazingly well. She's a little slowed down today, but we think that is because she got a Foley catheter put in this morning that seems to bother her a little bit. She'll have that for 24 hours. This is to make sure that her fluid input is the same as her fluid output.

We had a little disappointment yesterday. We had to move out of our big room into a much smaller room. The hem/onc floor that we were on had some moisture issues and wasn't up to the standard that is required for immune deficient kids, so everyone was moved to another floor with much smaller rooms. We still are in a "transplant" room so ours is a little bigger than others, but after living in what would be considered a spacious apartment in NYC, we're adjusting to a little less room. On the bright side, it's much easier to keep Greta close to her IV pole.

All in all, we're all doing very well. We're taking it day by day, knowing that soon we'll all be home together. Thanks for thinking of us and all the kind notes.

With Love
Greta and family.

Day -4

It's day -4 (minus) which means that Greta will getting 2 more days of chemo 2 days of rest and then Day 0 will will be her infusion day. Then the count up to day 100 begins.

So far we couldn't ask for things to go more smoothly. Greta is still as active as ever. She's been passing the days by watching Sponge Bob, jumping on anyone who will let her, playing with her doll house, coloring and her new favorite activity, washing her toys. Greta hasn't experienced any of the side affects so far. Her counts haven't gone down much yet, but her doctor assures us they will. He also anticipates that she will be slowing down in the next couple weeks.

We are fortunate enough to have one of the biggest rooms in the hospital. We have lots of space and a nice big window that spans one whole side of the room. It may be freezing outside, but our view is of a sunny blue sky.

Thank you for all the prayers and offers for help. Words alone cannot express how much we appreciate the amount of help we are receiving from our family and friends. The good Lord has truly blessed us.

Love,

The Betz Family

Day One

Greta's doing great so far, she slept well last night and so far only seems to be somewhat more tired than usual. Gavin and Mommy are heading up to the hospital this evening to spend time with Greta and Daddy before bed, it turns out Gavin will be able to visit her for a couple of more days yet.

Greta's getting chemo every 8 hours for 4 days, and then a different chemo drug for another day and then she gets a day off before the stem cell rescue process (IV infusion). She's being seen by various specialists during this time to get a baseline for various functions; hearing, vision, motor skills, cognitive and social development, nutritionist, etc. Kristi says people are coming and going all day long right now, which helps to make the day go a little more quickly.

Their room, this time, is large and bright with lots of room for all 4 of them to hang out together. Kristi and Randy are taking turns at 24-hr shifts, switching mid-afternoon to collect Gavin and spend some time all together while they can. A few of you have asked about visiting, but unfortunately no one is allowed to visit Greta at the hospital during this phase. Her immune system will essentially be eradicated, so she will remain isolated until it is safe to come home. You can, however, send email directly to Greta! DeVos Children's Hospital offers the opportunity to send email via their website, which is printed and hand-delivered personally to Greta and her family, http://www.devoschildrens.org/?s=3&hospID=36D00930453745378A180CE81B08FB00# offers a link on the far right side of the page where you can compose and send a personal message.

Thanks, as always, for your inquiries and emails. We will try to post an update each day.

Love,
Kari

Today's the day

We're heading in about an hour to admit Greta for her chemo and stem cell transplant. We're all a little nervous, apprehensive and anxious to get started. It was hard to see Gavin say goodbye to his sister this morning, knowing he probably won't get to see her for 3-5 weeks. He will surely ask about her every day.

Thank you again for all the offers to help. We will provide my sister Kari with any wish list items that we may need, so please keep in contact with her. kmupham@yahoo.com (Thanks Kari).

Please keep us in your prayers! We are entrusting our daughter's care in Gods hands and we have faith that he will take good care of her and heal her completely!

With love,
The Betz Family

Monday it is...

Greta does have an infection known as H Flu. It's something we're usually vaccinated for as kids, but because Greta's vaccinations were suspended, she's not immune. It is being treated with antibiotics and the ENT felt he had removed most of it during her surgery Monday so we have the go ahead to start her transplant this Monday.

We'll go in on Monday afternoon and she'll start her chemo on Tuesday. She'll receive the chemo for 6 days and then she'll get two days off and then they will infuse her stem cells on the following Wednesday. We are anxious to get this part of the treatment going!

Many people have asked what they can do to help out during this LONG part of Greta's treatment. We are so appreciative of that, we're just not sure right now what we'll need. When we do know, we'll be sure to ask.

Thanks so much,
The Betz Family

Wait and See

Greta had her surgery yesterday so now it's wait and see if anything grows on the cultures. The good news is the ENT didn't see anything to indicate there was anything "scary" (his words) as in a fungus growing so we're pleased with that news. For now we're just waiting for the results and to find out what the plan is for transplant.

For her part, Greta did great. She has had a little headache pain from the scope, but seems to get over it quickly with some Tylenol. She was pretty active last night, you would have never guessed she'd been sedated earlier in the day.

We'll keep you posted as soon as we hear anything!
The Betz Family

Slight Change of Plans

Tuesday Greta was in the clinic for her all day chemo test. She was given a small dose of the chemo drug that she will receive for her transplant and then had her blood drawn at various intervals to get a baseline. This will determine what her dosage should be when she gets the real deal next week. We were also told that due to the Sinusitis, Greta would require another CT Scan on Friday.

Wednesday we had a wonderful New Years Eve. Randy and I took Gavin bowling with the neighbors. Greta stayed home with her babysitter, we didn't think she was quite ready for bowling just yet. Afterwards we all celebrated together at the neighbors house. Greta had a great time playing with the balloons and dancing. New Years Day we all slept in and then went to the neighbors to watch the Michigan State bowl game. Wasn't quite the ending we had hoped for, but pretty much what was expected.

Today we went in for Greta's CT Scan. We got the call this afternoon that her Sinusitis isn't clearing up and that it actually has thickened even more on the right side. So we'll be seeing an ENT on Monday where Greta will undergo sedation and have her sinuses suctioned to determine if there is an infection present. This will likely push back her transplant, whether it's only a couple days or a week will depend on if there is infection.

We're all pretty anxious to get started on her transplant...(and a little nervous) so this isn't the news we had hoped for. But Greta needs to be at her best for the next step and we'll do what needs to be done to get her there.

We hope everyone had a safe and happy new years and here's to a healthy 2009 for all of us!

Love,
The Betz Family.