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Update Saturday 12-08-01: Happy 1st Birthday, We know you are having a hard time right now but remember god is with you. We pray for you each and every day to be strong throughout your treatments and to have god at your side to help you through this.

Today is a real joy for us the doctor was able to let Savannah come home last night so that she could spend her birthday at home, she is going to go back to the hospital this week so that Dr. Meager can do the Broviac replacement but Savannah is here with us now. Savannah is having a good deal of nausea today, she has vomited twice so far this morning, she is taking a nap right now which is good she needs her rest. I have noticed her coughing as well but that is because of the tumor inside of her lung. Overall though she is having a good day she always has her smile on her face for us and laughter in her heart. A small party has been thrown togeather for this afternoon it was kinda hard to plan ahead because we couldn't be sure where she was going to be after Wednesday's CT.

Update Thursday 12-13-01: Yesterday was Savannah's weekly appt. and she was a very good girl, its hard for a little one to sit in one place so long but she did it, we were there for about 6 hours her counts are on the down side and she did have to get another transfusion for hemoglobins. The new chemotherapy the doctors want to start consists of VINCRISTINE, DOXORUBICIN, and IFOSFAMIDE Savannah is supposed to start this on December 26. Next Wednesday at her weekly appointment and they plan to do a chest x-ray and an echocardiogram (with the new meds they have to keep track of her heart a little more closely) as well as needing more blood products, her red blood cells are also going down so they think she will need some by next week. We still havn't heard when the broviac is going to be replaced, thank god it is still holding up.

Update Wednesday 12-19-01: Today was Savannah's weekly appointment the doctor had her scheduled for an echocardiogram (this was done to establish a base line) to monitor her heart and she also had a chest x-ray today. The chest x-ray showed an increase in size of about 20% since her last one back in November however in comparison to the CT done 2 1/2 weeks ago there is probably not that much of an increase so she is holding her own for now. The doctors are takeing a more aggressive approach with her to see how she reacts with this new chemo. They will be doing chest x-rays about every 2-3 weeks to keep a closer eye on things and have only laid out a regime of 2 cycles (6 weeks) with this chemo. The Vincristine will be given 1 day every week, Ifosfamide for 5 days every 3rd week and Doxorubicin for the first 2 days every 3rd week beginning 12-26-01, these will be done togeather while she is in for a five day stay during this time she will also get Mesna which is to counter the effects that can make the Ifosfamide fatal. As for her blood counts she has bottomed out this week on her white blood counts, ANC's and platelets. Her platlets were the worst down at 6, I new this was happening because every shot I gave her left a good size bruise on her legs and she had some on her head as well from bumping into things, so I took a marker and wrote FILL ME UP on her bandage before we went to the hospital today. The Hospital has also implimented the winter policy restricting visitors under the age of 13, they may only be in the waiting areas no visiting in the patient areas because of the cold and flu season and as we all know kids are very good at passing the bug so we are going to see about alternate plans for Lisa, Jimmy and Tyler 3 of the 5 days that Savannah has to be in the hospital.

Update Friday 12-28-01: First of all I would like to wish you all a Happy Holiday season and to thank everyone for the kindness, support and the many many prayers being offered for Savannah. With the help from all of my co-workers at Granite Construction Co, Life Care Solutions and all of our family & friends, you have all made this a Christmas we will never forget. I can't thank you all enough but I can tell you Savannah gave everything and I mean everything a great big hug. I don't think I've ever seen her so happy, My whole family has been touched by your thoughtfulness and generosity. AGAIN THANK YOU ALL!!!
Savannah did go into the hospital on 12-26-01 to begin the new course of treatment. I was told by Dr. Lammers then that the echocardiogram did show that the tumor is compressing the artery that goes to her lung (Not good) she still has sufficient blood flow but the doctors are scared, we need to get this monster to shrink. Until today Savannah had been handling the chemo well, she has begun vomiting and has started to run a fever 101.3 I don't know that this is a side affect from the chemo or not, all of the other kids have been passing a bug recently and I think that this is where it my have come from. As long as Savannah is running a fever of 101 or higher she will have to remain in the hospital so we will have to see how things go between now and Sunday evening that is when she is supposed to finish this chemo. I did speak with Dr. Crouse today and she wants to have another chest x-ray done this next wednesday to see if there is any change yet. I want to see SHRINKAGE, SHRINKAGE, SHRINKAGE!!! Keep your fingers crossed and your prayers flowing that this chemo starts getting some positive results.

Update Monday 12-31-01: Tonight most people are celebrating the coming of the new year, in a way we are too but for us it is more of a hope for a better year and to reflect on what has happened in 2001. Our entire family was hit pretty hard this year with tragedy as was our nation, we can only hope that 2002 will be our year to heal. Happy New Year!

Today we were finally able to bring Savannah home. Her stools are starting to firm back up and she was able to take her meds and some food without vomiting it up. She has had a long and hard treatment this time but she still handled it well, in between her vomiting she still took time to play and of course spent plenty of quality time rocking daddy.

I hope everyone will enjoy the updated photo page I finally got some pictures done and in the computer its hard working everything into only 26 hrs in a day. Savannah goes back to the doctor on Wednesday for clinic and another chest x-ray we will keep you posted on how it turns out.

Update Thursday 01-10-02: First off I should appoligize for not getting an update in sooner Things have been busy for me lately. I will try to do better.
Yesterday we went to Savannah's clinic appointment actually we had to go early Savannah sprung a leak in her broviac line again so it needed to be repaired, while we were waiting to get that fixed someone came by to see her and she started to cough it was funny only because when she coughs I usually pat her on the chest to try and help it and now she has started to pat herself and the nurse thought that was very lady-like of her. I thought it was pretty cute too, she learns fairly quick and will immitate what she see's. Our social worker at the hospital also approached me yesterday to see if it would be alright for her to contact the Make a Wish Foundation or Wish Upon a Star for Savannah. I really do want to say more but I think it would be better if I wait, I'll let you all know how that developes. On to other news the repair took up most of our time yesterday then it was back to onocology for the rest of her appointment she was given her Vincristine, her blood counts were actually good normally this is her low point time so I was happy about that, her x-ray report did not come as any shock to me NO CHANGE but that is good at least it hasn't gotten bigger now we strive to make it smaller, I keep my fingers crossed all the time and my prayers constant. (:makes it hard to write and type sometimes:) anyhow she continues doing well in spite of her setback. Today was also a special day for Lisa it is her 11th birthday and even though we had to keep things a little low key she had a nice day today.

Update Wednesday 01-16-02: Today has been a good day and a bad day. The bad news first I ws contacted today via e-mail about an 11 month old boy named Noah who has been diagnosed with a Rhabdoid Tumor of the Liver and then agian when I took Savannah to the hospital the Dr's told me about another little boy here who has recently been diagnosed with a Rhabdoid Tumor of the Kidney his name is Javier and he is 10 months old. These children are just beginning a terrible journey so please say a prayer for each of them and their families.

We were supposed to have Savannah admitted today for her chemo however she flunked her blood work so she will be at home for another week, her ANC's and white blood counts were to low to receive chemo.

NOW FOR THE GOOD NEWS Savannah continues to do well, she did have another chest x-ray done today and the doctor said that there is improvement so after her next chemo they plan to do another CT to see exactly what changes and how much there have been. Yeahhhhhhhhhhh! I also found out today that our friends in Oregon Stephen and Karrie received the results of Kate's CT and her tumor is shrinking even more, I am so happy for them and us, I know in my heart God is watching over these girls. Thank You Lord!

Update Friday 01-18-02: Savannah is back at the hospital when I woke up this morning she was running a temp of 102.4 so I had to take her in, by the time we got to the hospital her temp rose to 104.7. They did do a culture and as of this evening it has come back positive with Cocci in the clusters. We are still waiting for the final diagnosis of this Cocci but what I have found regarding Cocci is that it can be related to Valley Fever which depending on the type could be serious, I'm really hoping its not that. Before I left the hospital her temp had shot back up to 104.4 and it had come up very quickly in a matter of about 30 minutes. Savannah was given some antibiotics & tylenol so her fever was starting to come back down and she was resting comfortably. I hope to have more answers by tomarrow we will keep you all posted as we find out.

Update Saturday 01-19-02: No news as of yet regarding what Savannah has, she did have a better day the fever has mainly been down it came up a couple times over night but is leveling of to a normal temp. Dr. Palmer did tell us today that Savannah would most likely be at the hospital for at least 7-10 days for the antibiotics and that should her counts become well enough to receive her chemo then they would go ahead and start treatment, that alone is a 5-6 day stay, she also received another blood transfusion today to help bring her hemoglobins back to normal. Between the blood and with as much sleep as she got yesterday on daddy's shoulder she didn't want to have anything to do with taking any naps today, so we were quite busy with her. I was very happy to see that, however her broviac has been creating some difficulties on top of everything else, the nurse was having a hard time getting anything through the line (in or out) this afternoon. Savannah is always stingy when it comes to giving up samples of her blood, I usually have to move her into all kinds of positions to try and get the blood flowing and that wouldn't even work today.

Update 01-21-02: Savannah is doing better today, still no word on what it was that she had but I'm just glad she is getting better from this. she has also been eating better in the past couple of days so that's a good sign as well. Her blood counts are also coming back to normal now so I expect they will start chemo in the next day or two, after that she should be able to come home for awhile. Its always better having her at home but for her it dosn't matter where she is she always has a really big hug for her daddy weather I'm coming home from work or getting to the hospital it really makes no differance. I really cherish those hugs too, I know that whenever she gives out a hug she means it so she can squeeze all she wants.

Update 01-23-02: Just a quick note to let everyone know Savannah is going to be taken into surgery today to have her broviac replaced, with the infection she has had and the many many times she has had to have it repaired now is as good a time as any to get it replaced. I would estimate that she will be in the hospital about another week, she still has to receive her chemo treatments and that takes 5-6 days.

Update 01-24-02: Good morning everyone all is well with Savannah we had a late night but she is doing just fine. Dr. Meager told us that he tried to place a larger broviac into the left side of her chest however they had to return to the original #4 size and to put the broviac back in on the right side but a little lower. The reasoning for all of this is that the larger size broviac was just a little to big and there was to much tumor tissue on her left side where the tumor is compressing her artery. The other thing we found out last night was that the infection she had was a STAPH INFECTION so they didn't want to place the new line into the same location in case there were any residual bacteria in the original site. the surgery took about 1.5-2 hours and then she was sent to recovery for 1.5 hrs, she was still pretty groggy when she woke up but she was very glad to see some familiar faces. Savannah was resting comfortably when we had to leave and drifting off to sleep. They will start chemo on her today so its back to feeling pukey again and just when she had started to eat a little better to, she has begun eating solid foods recently and her favorite seems to be Cheerios (dry and anytime).

Update 01-29-02: The last couple of days have been busy for me in a way, Savannah is doing great. I spent the night with her Saturday night and we had a wonderful time. About 2 am she had woken up and wanted me to hold & rock her but when I went to lay her back down she started to fuss. I stepped out so that she would go back to sleep and came back in about 5 min she looked as though she were sleeping but as I walked by she popped her head up and made sure that I laid down before she would put her head back down. I thought that was so sweet of her to be so concerned about where I was. Savannah is like I said, doing just great she finished her chemo last night and is getting her last dose of antibiotics this morning so I can pick her up and bring her home this afternoon. I spoke with Dr. Lammers yesterday about getting her scheduled for her follow up CT. Next Wednesday at her clinic appointment we should have a date set for the CT. I'm already getting anxious, I want so much for her to get better and I know she wants to get better too.

Update Tuesday 02-05-02: Savannah us doing just fine we had to go to her weekly appointment yesterday and everything was good. they had yet to schedule her CT so our next appointment they will call me, they are targeting for wednesday or thursday next week for the CT and admit for chemo again. We continue to keep our fingers crossed and hope for the best. I would like to thank evryone for the messages that you write in the guestbook we do read them all and very much appreciate the words of encoouragement and all of your prayers. I would also like to mention to everyone to keep the other Rhabdoid children in your prayers as well some of them are not doing to well and a few are now in hospice care. They have fought with everything they had and they have done it so courageously!

Update Tuesday 02-12-02: Yesterday was quite eventful, Anja put Savannah down for her morning nap and miss Savannah decided she would rather play with her new broviac tube. SHE BROKE IT! Luckily Anja had peeked in on her and saw what was going on, because there was blood everywhere. I rushed home, we got her cleaned up and I took her to the hospital to get it repaired. She then had to get another transfusion to replace the blood that she had lost. Talk about a scare, if Anja hadn't looked in on her........ All is well now and tommarrow we go back for her CT and check in for 6 days so she can get her chemo.

Update Thursday 02-14-02: I didn't sleep well last night at all, my thoughts were of my baby. Yesterday's CT wasn't as I had hoped for there really isn't much change in the size of the tumor. My heart is breaking ever so slowly, I can't give up hope in my baby, if you look at her she is doing great. The doctor did tell me that I can stop but I can't I'm not ready . I don't have the courage to tell Anja just yet this information not today for I know it would tear her apart. I keep hearing the same words going through my head. I've told the doctors to try something, anything to try and get this thing to shrink, we will contnue treatment. I'm sorry if my typing is so lousy this morning nothing makes sense Savannah appears to be doing so well. please say some extra prayers with me.
This is not a good day.
I just found out Chayton Anderson 22 months old (also in rhabdoid kids page) became an angel yesterday just after noon.

Update Friday 02-15-02: We received the final report from her CT yesterday it showed growth in some areas and regression in in others. Overall there has been no change to minimal improvement, but no substantial worsening. When I spoke with the doctors we came to the decision that we would adjust her chemotherapy again, continue to try and get something positive to happen so that if it will shrink enough to allow them to do a surgery they will. We then talked about radiation again, the lung connot tolerate the amount of radiation needed to fight a rhabdoid tumor. If we can get the mass small enough a type of radiation (IMRT) that is more consentrated or focused might be an option so she dosn't lose her lung in the process. there are so many if's.
Doctor Crouse was bending the rules and wrote an order allowing our children to be at the hospital while she is there, which was very nice of her unfortuately it won't be needed this time because the adjustment in her chemo meant that she would only have to be in the hospital 3 days so Savannah is coming home today and the kids will get to start coming up next time, they were very happy to hear the news as they are very fond of their little sister and want to be with her.

Update Friday 02-15-02 7pm: We are home and Savannah is already asleep. I don't know what is happening normally her white blood counts and ANC's are good for the first week but this time they have crashed within 48 hrs, we are keeping a close watch on her because this just isn't normal for her. Anja is worried ( so am I) the doctor told us we are welcome back if something should happen otherwise we go back on wednesday morning for clinic we expect she will need a transfusion again her RBC's & HGB's are at the low end already too. Her chemo consisted of the Vincristine, Doxorubicin, & Cytoxin next time she will be in for a 5 day and get the Ifasfamide, VP16 and I think the vincristine again. With everything that has been happening I'm not quite sure of my memory right now. I'll have to check on that later.

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