Status of Surgery, Life Clinic and SIX YEARS REMISSION

My oh My I haven’t updated our sweeties website in quite a while! I figured this was the perfect time since Miss Talli just hit such a huge milestone! Monday we had some big appointments in San Francisco! She first saw Orthopedics to figure out the status of the surgery she will eventually get, which is the one where she will get a lengthening rod in her leg AS WELL as some sort of hip replacement (her leg is not growing from treatments she received and her hip is somewhat collapsing from her bacterial infection and the drainage surgery that she had to have on top of treatments as well) Since Talli is not in a huge amount of pain and she is still so small it was decided that surgery will most likely be put off another year and then we will reevaluate UNLESS of course she starts having pain. But as of now our girl is running cross country AND placing around 50% of her age group! The doctors were pretty amazed by that! I can’t even express how much joy that brings us! After that apt, she was then seen at the life clinic which is SUCH a huge milestone! There were some pretty heavy conversations about possible side effects from treatment. She is so wise and such an old soul that I think that she was somewhat ready BUT no matter what age the information we received was just a lot to process for her. She has been having some anxieties since the apt but I am just trying to help her process and keep her mind somewhat at ease and reminding her that everything we talked about were just POSSIBLILITIES, NOT definite. She just amazes me in so many ways and her sisters have just been so sweet with being there for her…so blessed to be their mama! We know how much you all love her and we so appreciate the continued love support and prayers!

Talli’s Bacterial Infection

I figured I would do a detailed update on what went on with Miss T a couple of weeks ago. 2131I am sorry for the lack of detail throughout that crazy week. I know you all love our sweet baby so much and were thinking and praying for us and I just cannot express our gratitude enough. There were just so many unknowns and I didn’t want to keep posting because things were just changing so much and we just didn’t have a ton of exact answers. When Talli stopped walking during that time so many things were happening at the same time. Lex had been sick the week before and Talli got her cold. Just a regular virus with the cough that just lingered. She developed that on the Thursday before everything started happening. Sunday I gave her a facial massage and noticed her eye was red and she said it hurt. That night she slept with us and woke up and said she had to hop to the bathroom. Next day wasn’t able to walk at all. We took her in to her primary doc up in GV and he 2134wanted an X-ray. The radiologist thought that they saw a small fracture in her leg. Our minds went crazy…why would she have a fracture and what will that mean for that leg since it is so weak from radiation and chemo and everything she had been through. Our oncologist wanted her to come in for an MRI. So we quickly traveled down to UCSF the next morning. It was a long day and things just seemed weird. Her Doctor came in and we instantly could tell something was up. He simply said “I think this may be relapse guys but I am not 100% certain” He just didn’t know why her leg would have that much inflammation and looked so similar to her first MRI from when they found the cancer. They wanted us to stay overnight and get a PET scan but we just wanted to get home and process everything. As all of this was happening her eye was swelling up during the appt. I asked him to check it before we left to see if he thought maybe it was pink eye. He told us to keep an eye on it and he still wanted us to stay over and we still refused. As we were driving home he calls us and was like this is all just really weird to me. It was almost like a Dr. House case. He was like what are the chances that she got an infection in her eye, it 2137got in her blood stream and just settled in that weak spot of her leg…He was kind of just thinking out loud and was like “no that would be so unlikely” And jon said “well this is us, everything rare happens to us” It was just talk at that point. So we were in contact with him all night sending him pictures of her eye. In the morning he said lets cancel the PET and get her into the ER…I think we need to figure out what’s going on with that eye first. SOOO then the craziness just exploded. We were admitted she had to get an IV, ultrasound of her leg and MRI of her head. AS soon as we got out of the MRI we were surrounded by so many different teams. It was just insane but so neat that all these doctors were just ON IT! Lots of decisions had to be made from there. Surgery on her hip to drain all the fluid in there, antibiotics, eye test, neuro test, getting poked multiple times and then a pic line put in, not being able to move at all without being in extreme pain (she didn’t even want me on the bed near her to snuggle her cause she was hurting so much)…it was all just too much. Then it was just a waiting game. Her cultures never grew back but the fact that her eye went down and her leg is healing lets us all know it was just some sort of crazy bacterial infection! We still don’t know whether it was the same infection or separate infections and how she even got them. She is still working on walking normal again. If for some reason that leg is still hurting and not getting better (which it already is improving so much) then we will get more scans but as of now we are waiting till August to do more scans since she just had these ones and talk of relapse is no longer a concern! Yesterday she was taken off the Orthopedic care and he was very pleased with how she is recovering. Her blood test results also came back and the Infectious Disease Doctors were very happy 2140with those as well. She will still be on antibiotics for a couple more weeks. This was all JUST CRAZY! But so grateful that it was the better of the two evils and that our doctors were so on top of things that they once again helped heal our baby! She is now working with our awesome friend Tamsyn in getting that leg nice and strong again. That week really did a doozy on us. When she was younger she kind of didn’t know exactly what was going on. This time the terror she had was just devastating. She kept just asking them not to cut her leg off…It saddens me so much that that has to be a fear of hers. She kept asking Jon and I why we were letting them hurt her and why everyone just wanted to hurt her. My heart just broke yet again into a million pieces. I know that yet again she will bounce back from this with that amazing old soul of hers…and that will give jon, lexi, ne and me the strength to do the same. Until then we are just working to bring a little beauty to each day and get things back to as normal and calm as can be. Thank you again for all the love and prayers! Much love to all!

October 2014 Update!

Hi everyone! Goodness it has been forever since I did an update! Our little miss is doing so wonderful. She had her 2 YEAR APPT TODAY! This time she was not put under anesthesia and she received an Echo, blood test, X-ray of her chest and X-ray of her leg and hip! And I am so thrilled to say that they were ALL CLEAR! She now moves to being seen every 6 months and I am so relieved that she is no longer getting MRI's. The only way she will have to get another MRI is if the X-rays show anything fishy! Our sweet T is just doing great! She and Lex started Kindergarten this year…and they are loving it! Lil sis, Kenz is doing two preschool half days…and not loving it so much but we will figure that one out, I am not sure she is ready! Talli is just thriving…she is so artistic and smart and loving! Her leg is really getting strong, she even prefers to do hopscotch on that leg rather than the other. 

None of us were sure what to expect when it came to the strength in that leg and hip and to see how amazing her body has responded to treatment and has healed is just incredible! There are still a few negatives we are dealing with but they are so minor compared to what could have been. Her hair is still very thin and breaks off easily…which in all honesty, if you know our T, the hair just fits her perfectly!! Unfortunately she gets tummy aches and headaches pretty frequently BUT they are never accompanied by a sickness. She also has been having some nightmares which is heart breaking because she doesn't know how to explain them but I kind of attribute it to all that she has been through. I wish I could take all those bad feelings and thoughts away! On a positive note, they also did an article on her a few months back in the UCSF website page which was pretty special, if anyone wants to check it out you can at:

I also wanted to let those of you who helped contribute to the Gold Fundraiser, know that we were able to raise $300. I want to thank Mandi Neue and Amanda Ferreira for all of your help! I would also like to thank those of you who donated!!! Thank you all for the continued love and prayers!

October 2013 Update

Well it has been quite a bitter-sweet time for us these past couple months. Let’s see the last time I wrote was when the girls were starting kindergarten. They started and had a very difficult time with it. Jon and I went back and forth about switching them to Transitional Kindergarten (which is basically the type of Kindergarten that we all had when we were younger…not as rigorous and shorter days) it was quite the battle but ultimately we decided that Transition was just a better fit for them. They just were not 

 

emotionally or socially ready. Jon had a hard time accepting this because academically they are both so ready but I just did not want to push them to a point emotionally where they ended up disliking school. So since the switch it has been so wonderful! They love school! Watching them grow has been so neat! Then their 5th Birthday was September 21st! I CAN’T BELIEVE MY BABIES ARE 5! We had such a great time celebrating that weekend! Those were the two more positive events going on with us. Then boom October hit and it’s just been a challenging couple weeks. First we had the passing of my Grandmother Landon and that has been so difficult watching my whole family grieve. Then we went into the week after her passing with Talli’s scans which we always have anxiety about but we were still staying positive. Her MRI was clear…phew! Then we received the call about her CT scan…they found a spot, which is most likely nothing (I feel in my heart that it is just the clearing up of an infection that she was either just getting over or just starting since it was going around our family) But none the less it just angered me. Angered me that this is just the rest of our life of this total worry! We are in a better state of mind now but the days after were just difficult! I feel my baby is healed of that nasty disease but the fact that the worry is even planted is soooo frustrating! I try to have a non-complaining attitude, especially from seeing how many others are suffering from the actual loss of their child or just the hurt that I see so many around me going through. I try to stay positive…but some days are just hard. Now it’s just a waiting game for her next scans which were initially supposed to be in three 

months anyways but she was switching to a schedule of a MRI and CT every 6 months and then just an Xray every 3 months. This one will just be the same thing she has been getting. If that spot grows a little or not at all, they will assume it is just something like an infection. If its cancer it will grow at a faster rate. The reason they are waiting the 3 months is because, regardless of if that spot grows, they can’t do anything until it is a certain size. Even if it grows as fast as this cancer usually does, it still will not be big enough to biopsy, so putting her through scans and anesthesia in a month would be pointless. So just lots of prayers right now that the spot was nothing. Talli is still is doing great though. We have noticed that she has been having some possible side effects from chemo and from the whole year she went through. She has been getting some major leg cramps which they had always said that that was a result of one of the chemo’s that she was getting but I thought that that was just during treatment. But it very well could just be a result of that leg being tight…but even that tightness has improved! The only other thing I have noticed are these massive fits. It’s almost like when she was in the hospital. She would have these extreme outbursts and nothing would calm her down, which the doctors assumed were from the steroid that she was getting so they had taken her off of those. I don’t know if she is just reverting back to those feelings or what the issue is but there are times where she has these fits and literally my lil T is not in that lil body. It’s hard not being able to calm her but they are also not frequent so that’s nice. I also wanted to let you all know about the Gold Fundraiser…we raised $563 for Childhood Cancer Research! I want to thank ALL of you who helped support this cause and I especially want to Thank Mandi Neue for making the awesome headbands that were a huge hit and her cousin Katie Kraut who raised a HUGE chunk of that money for us! Their 

hearts are just so neat! I am hoping next year to make it a little bigger and get the word out there to more people but for just starting out, I think we did darn well! SO THANKS AGAIN SUPPORTERS! Maybe one day all those professional football players will be wearing GOLD in September and there will be lots of Commercials bringing awareness to these precious kiddos! Again thank you for following our journey and supporting and loving our family through this! Much love!

Tinkerbell Talli

Latest update

Such a busy busy summer it has been! Lots of camping trips have been taking place since we were not able to go at all last summer…it has been so nice! I originally intended on updating Talli's webpage during each scan but I dropped the ball on the last one! I am sorry to all you amazing followers and supporters. Needless to say our lil sweet T is doing so well! She had her 9 month scans back in July and everything was ALL CLEAR! After her 12 month scans in October, she will move to every 6 months for the next five years. The twins start kindergarten next week so it will be yet another big change for our family. Although exciting, it is so bitter-sweet for me! They did do a step up program which was rough the first couple days 

but they ended up loving it…Ne and I had a harder time with it, she missed her sisters. But it was an awesome program that got them used to being away from me and made me realize they are both READY for this even after our rough last year. Talli’s leg has been doing great! Still much weaker but that’s expected. We are starting to see a little bit of discrepancy between the two legs, which eventually we will have to do something about but it is not a huge difference as of now. Her hair is growing fast and it is like a lil pixie cut right now! She reminds me of Tinkerbell, which to me is meaningful because we used to call her Tinker Talli…in fact the theme of the twins first birthday was Tinkerbell Talli and Lexi Lou Who! So anyways, things have been moving right along. And besides my usual update, I wanted to put it out there that September is Childhood Cancer Awareness month and I want to help in turning the world Gold! So I plan on purchasing gold rings that say hope on them and a few other gold items and selling them through Talli’s webpage. The site that I am getting them from is called choosehope.com and proceeds from getting them off that site will be to cancer research. Then once I sell 

them (I have not figured out pricing yet) not only will people be purchasing something to show support towards childhood cancer but the money that is made from it will ALL go towards cancer research. So when I get that all in order I will make a post through facebook and on here to let everyone know. Wouldn’t it be awesome if everyone wore Gold of some sort to bring acknowledgment to all these amazing warriors and angels that this horrible disease has affected and to find MORE funding for CHILDHOOD CANCER RESEARCH!  

Life without Treatment and Talli’s recent Scans!

Talli had her first set of scans back in January and they all came back CLEAR. We were so incredibly thankful! Now we are just preparing for the next scans in April. I have been really trying to cling onto Faith and to be as positive as possible but I have really found myself struggling. When Talli finished treatment, I just kind of expected this ultimate relief and thought that everything would just be easy again, I mean heck we had been through quite a year so it could only go up from there…right? But it hasn't exactly worked out in that way. The first couple months were great…being with my girls and not having to travel or worry about every little thing…being able to surround us with family and friends again without putting a bubble around T. It was nice…but then this anxiety and worry started overwhelming me again, almost bringing me back to the beginning of Talli's sickness. I know a lot of it stems from watching 4 of the families that we knew through this loose their little ones and it has just been making me…really angry and upset. Then hearing one of the other girls we knew relapsed, she has the same type of cancer Talli did. It makes me beyond uneasy…unsure and soooo sad! I just keep praying for some sort of peace and although life is uncertain I need to just trust God's plan…it's something I am working on. BUT onto our amazing Lil warrior. SHE is doing so good. They told us her immune system would be a little weak after everything she has been through but surprisingly we all had a pretty intense cold make its rounds through our family and Talli was the only one who didn't get it! We have been doing her physical therapy with her and that little leg is definitely still weaker than the other but it IS getting stronger and stronger. She is able to run and we go climbing all the time and she just does awesome! She loves showing us different stretches and says "this will really help my leg get stronger" Too cute. Lex and Kenz have been doing good too. Lex was having some issues after Talli's treatment…we were thinking we might have to put her in some sort of counseling just to deal with some of her emotions. She has always had this amazing heart but very sensitive and lately everything makes her sad…she doesn't like when I leave her, she doesn't like seeing anyone upset and she almost gets so upset that she shuts down…it's heartbreaking to watch a 4 year old have to figure out all those emotions. Kenz on the other hand…woowee besides being a little spit fire she is perfect! Just a total crack up! And as you can see from the different post I have put on Talli's webpage I still haven't quite found the exact route I want to take with starting a foundation. For now I am trying to work with Alecia's Angels and help them find families that they can help…if anyone knows of someone please contact them or me! I will also be updating this page still with different children I know whose families need some prayer, love and some that need support financially. The three that I have on here at this time have since passed away but they could ALL use our love and our prayers and I know two of the families still need help financially if anyone is able to give. There is also another little boy that we know that I will be posting soon, he is still in treatment and his mother is a single mom living on her own with him in and out of the hospital and in family house. She really could use the help so I will be posting their information as soon as I get it from her. THANK YOU ALL AGAIN FOR FOLLOWING OUR JOURNEY! MUCH LOVE!  

September 15th through October 25th

The girls turned 4 on September 21st! It was such a great day and such a great weekend! Talli was neutropenic, so we were not able to have a big party but it was such a nice time regardless. Her nurses at ATC threw her and Lex a lil party and then I had help from my friend Mandi in getting their cakes and decorations ready and she made them some tutus. That night we just had a small party with my family to celebrate the twins and Kadens birthdays and then we had a small one with Jons parents that Sunday. Good memories! Talli’s counts did about the same as always but she was feeling great and we headed down for her LAST CHEMO on 10-1! We could not believe that this moment had come! We are so incredibly thankful and excited that our baby is done with treatment BUT we are also just so scared of what’s to come. I know that we have been bonded through all of this and that this year has completely shaped who I am as a person and I believe it has done the same for my family members so I know that what we went through was placed on us for some good…BUT it is still hard to prepare yourself for what else may come out of a very intense year of a treatment that healed her but could have done damage in other areas of her body. I have all the Faith in the world BUT I just don’t want my child to suffer anymore and it is just plain scary. I am also in just such a weird state of mind regarding what we went through…in the beginning I didn’t want our family to go through this, obviously and I just didn’t want to be in the hospital and around all the sickness and it hurt to just know how many kids are out there suffering. NOW I don’t want to be away from it…I don’t EVER want to forget about these children and their families and our nurses and doctors who are here daily helping families like us through it. I want to always be connected to this experience and life that we went through for the past year. I am currently trying to figure out a way to stay connected and possibly turn this website into some sort of foundation to help other families; we will see what we can come up with. But for now back to my sweet warrior. We headed down 10-17 for her scans…always an uneasy thing! Lex was able to come down and so was Sinaca (one of Talli’s biggest supporters and someone who has been like a big sister to the girls and a HUGE help to me) came down as well. One of her Doctors called with the results that showed Talli is in REMISSION! It is impossible to describe the different feelings and emotions we are having. So beyond grateful though! To everyone and especially the One who carried us through all this! THANK YOU JESUS! And thank you all for just loving us and praying for us and EVERYTHING! GOD BLESS and I will update this website with any info on Talli and hopefully with info on what we figure out to do with a foundation! MUCH MUCH MUCH LOVE!

Goodby Talli from 7 Long

August 14th through September 14th

Talli’s counts took 3 weeks to recover again and her platelets were just getting so knocked down. She needed two platelet transfusions after her 14th chemo and at one point they got down to some pretty dangerous levels. Jon and I were starting to get pretty concerned with how much the chemo was starting to affect her. So when we went in for the 15th chemo on August 27th we discussed with her Team all of our concerns and they decided to lower the dosage by 20%. Also during that stay we discussed with them about how tight her hip has been…she can’t bend it well at all and of course we knew that after radiation it would have some tightness but her Doctor order an MRI just to see what that leg and hip were looking like. That day of her MRI was a tough one…she was tired and we waited most the day for her MRI. Poor baby hadn’t eaten for 20 hours. All three of us were on edge. The MRI took longer than expected so Jon and I let both of our minds go back to the beginning and we started freaking ourselves out…BUT it was all for nothing because one of our Doctors stayed later than he needed too just to show us the results…which looked amazing, no sign of tumor! We were so relieved. So we headed home that night and although they lowered the dosage it still took her forever to recover…she still needed a platelet transfusion and she still was miserable from being so backed up. We knew these end treatments would start affecting her worse than the beginning but it was so hard to watch…especially when we saw the MRI which looked like the perfect results. Our doctors all talked and had decided to lower the rest of her chemo dosages by 36%. This made us feel so much better! So when we went in for her 16th chemo on July 13th it was only a two day stay and Lexi was able to come. Talli tolerated that one so nicely and although she got backed up, it was nothing compared to before. She still had to get a platelet transfusion though. All in all it was so nice to see her feeling better and now we just have 1 chemo left! 

July 8th through August 13th, 2012

Talli was finally admitted for her 13th chemo which was a 2 day one on July 13th. Little sweetheart went into the hospital being so cheerful and happy on Friday but by the next morning after that first day of treatment she was a completely different child. She was not feeling good at all. She wanted to lie in bed all day and she was getting super backed up again so her little belly was in so much pain. But we were able to go home Saturday night. When we got home it took her a few days to recover from being backed up but when she did she felt great again! She had to get a platelet transfusion but that has been pretty common after each chemo sessions. We then had a nice extra week at home because we had to wait till her counts climbed back up and they put off her outpatient chemo because they like them to land on Monday through Friday. So we headed down for her 14th chemo on August 6th. She did pretty good…she got a little sick but she was not having the stomach issues that she usually gets in the hospital. It was a very busy week but at the same time it was neat because we did some fun things and had some great company. My parents were able to bring Lexi and Kenzie down along with my nieces Bailee and Jayda so that they could experience the whole chemo deal. We were sad that we were not able to bring my nephew Kaden down because the twins really love having their cousin around but it is just way to hectic down there and three 3 years olds would have been CRAZY ? Kenzie already acts like a 3 year old so really it would have been 4 wild 3 year olds running around. Talli's Uncle Cam and soon to be Aunt Angela were able to come have dinner one night with us and then their Uncle Chan and his girlfriend Anna were able to come hang out to. It was a nice time but boy by the time we got home we were EXHAUSTED! It also happened to be the week of the fair so when we got home we unloaded took a little rest and then headed out to the HOT fair. The girls had a blast though and they got their faces painted which they just loved. Actually the lady painting their faces asked if she could do Talli’s whole head. It was so cute! We now are waiting for her next chemo which will hopefully start somewhere around August 25th. It will be a five day one. As of right now we are just waiting for her counts to bottom out so they can build back up. We are actually getting a blood and platelet transfusion as I write this. She got knocked down pretty quickly this time. But it was so nice because our doctors and nurses from UCSF worked with our nurses up here so that we were able to get the transfusions in town…We are so thankful for that! It is just so much easier on our family! So just 3 CHEMOS LEFT! God Bless You ALL!

May 28th through July 7th , 2012

 

Talli’s two day chemo on June 7th went fairly well. It was nice to have a short one. We got such a nice break at home and we were able to spend lots of time with our family and friends. Yet we had forgotten how much those two day ones knocked her counts and we didn’t realize she was neutropenic most of the time so we kept busy and thank goodness she didn’t catch any sickness. We then headed down to SF on June 25th for her 6th to last chemo! It was a five day inpatient one which we really need to mentally prepare ourselves for but unfortunately neither Jon or I did. It was a pretty difficult stay…Our sweet baby is just so over all of this…we all are! I know these last treatments are important but it is just getting harder and harder to hang on. Talli is just getting more knocked down by the chemo. A lot of the time she was tired and in quite a bit of pain from not being able to have a bowel movement. It was so hard to watch her in so much pain. But although it was a tougher stay, she still amazes me with how strong she is, even through the fits and the pain she still found time to be her goofy loving self. I just need to keep reminding myself that if God has made her so strong and so faithful at such a young age then He will get me there too, just have a little more work to do on me…and Jon?. Talli finally had her bowel movement 3 days after chemo ended…meaning she went a whole 6 days without going. Even to this day she is still having a lot of discomfort which is kind of stinking because she is supposed to be admitted this week for another 2 day one, which is the gnarly one?. She also developed a cough throughout the last couple weeks and I am praying that it is just allergies and not the beginning of a cold. She also has to have another test for her heart because the last one showed signs of her heart muscles being slightly weakened. Scares me but they seem pretty optimistic that it is not something to worry about. I always worry though, especially after this whole week having to watch Jon’s Dad suffer in the hospital and finding out he has some heart issues. Its scary stuff! So I pray her results come back as just a fluke! BUT on a positive note, we just have 5 MORE CHEMO’S LEFT and I just pray that God keeps working through my children and family and friends to pull us through.