Tuesday, September 30, 2008

Miracle!


I'm sorry it's taken me a few days to get this post out. These last couple days I've accepted subbing assignments 2 days in a row and then I have a bread making class on that I signed up for on Tuesdays awhile ago and young women's duties, so my days and nights have been packed full. I was subbing on Tuesday when I got a call from Dr. Sanders (after me calling several times that morning asking about the results). She told me that the results of the test were shown to 2 different cytogeneticists with Phd's in that area and they both said that the abnormal chromosomes were not pre-cancerous. They will still be on guard in case anything changes and they are scheduling another bone marrow biopsy for December.


Scarlet's pediatrician called me last night saying that he had received some notes from the Immunologist who specialized in this area. He told me that when they did the first draw they saw some cells that were cloned which would possibly indicate leukemia but on the second draw there were no cloned cells.

If you've ever doubted miracles, doubt no more. I know it was because of fasting and prayers that she no longer has any signs of cellular cloning. Heavenly Father has once more blessed our family with a miracle. I owe everything to Him. Charlie gave Scarlet a blessing on Sunday and in the blessing he told her that she would get through any trials she may face that her body would be strong, etc. I was really struggling to have faith and immediately after his blessing I felt awesome peace and knew that what he said was true and that it was Heavenly Father's will that she live. I feel badly for ever doubting in the first place. I know all you parents can empathize with me; the thought of losing your child is overwhelming.

I need to thank all of you for your kinds words and your prayers for Scarlet. It helped so much to read the messages you sent me. You are all such good friends. It is such a blessing to have family and friends who are there to support you, and pray, cry, and laugh with you.

Thank you all again for being willing to fast and pray for Scarlet.

I was writing in my journal to Scarlet the other day and I told her about fasting and it made me think back a couple years ago when I was pregnant with her. I was the Beehive advisor and one Sunday I was supposed to teach the lesson on fasting and I didn't prepare very much because I thought "How hard could it really be?" It was during the lesson while I was stumbling on my words and not really saying anything very supportive of fasting that I realized that I didn't have a testimony of fasting at all. Before that time, I struggled with fasting entirely and never appreciated its power and effectiveness at bringing you closer to the Savior. I love the peace and the spirit that comes when you take the time to really study and pray while you are fasting. I have a very strong testimony of fasting now, it has been an amazing aid and comfort while enduring everything with Scarlet. I've learned so much over the last 2 years and I love every lesson I've had to learn, it's made me a better person and a better servant of the Lord.




Thank You All So Much!!!!

Sunday, September 28, 2008

September 18th

It was a year ago September 18th that Scarlet had her transplant. I would have blogged on this sooner but a lot has been going on. To celebrate her 1year mark we took her to Sears to have her pictures taken. It was a lot of work trying to get some of them to turn out well and for her to cooperate with us, but as you can see they turned out pretty cute!
Scarlet loves her monkeys. She must have at least 4 of them and most go to bed with her at night. She loves giving them kisses and hugs.
I have been substitute teaching again and I am amazed at how many kids have their own cell phones...Scarlet thinks she needs one too. :) I gave her mine in a desperate ploy to get her to smile; it worked.
I hope we have many more years to celebrate her transplant day. I am starting to feel sick with anxiety waiting for the results to come back. I'm trying so hard not to give up hope and to have enough to faith to get through this.
Scarlet is our sweet angel and I can't imagine not having her with us. While in the hospital with Scarlet, I remembered seeing a mother in one of the small rooms with her son Christian, who was about 17. As I was walking in the halls one day, I remember seeing her crying, and the transplant doctor with her who looked very solemn, talking softly outside their room. I couldn't hear what they were saying and honestly I really didn't want to, at that time Scarlet was still waiting for transplant. It was a little after Thanksgiving and Scarlet and I were at the Ronald McDonald house, when I heard a lot of commotion out in the halls (anybody in the halls altogether was unusual) the family next door was packing up their belongings in big boxes. I watched them load all of their things into their truck and I noticed one in particular that said, "Christian's memories" and it had a smiley face on the box. I can see the box in my mind and it reminds me to make everyday a memory for Scarlet despite my grief and fear.
I am struggling to maintain hope. It is my greatest desire that the doctors call with good news. I keep reading more on myelodsyplastic syndrome and it isn't something that can be supported for very long. Once they start getting blasts (cells that retard good cells) in their blood the chance for survival is very minimal and life expectancy is only months. I talked with Rhonda again on Friday and she told me that there were no blasts in her blood, which is reason to have hope. I'm so afraid for Scarlet.
Please keep praying for her to be ok.



Tuesday, September 23, 2008

Uncertain News

So...a couple weeks ago was Scarlet's 1 year post-transplant appts. and as I mentioned before they did a bone marrow aspiration to look at chimerisms, chromosomes, and ADA enzyme function. The chromosomes test takes a little over a week and so the results weren't back by the time we had our exit conference with Dr. Sanders. I received a phone call from Rhonda, the attending PA at the SCCA last Friday and she told me that the results of the chromosome test were very strange and that they would like to draw again, which we will do on Wednesday. I should have known then that it wasn't good, because like I've said before it's never good news if one of the PA's or DR's call. I was worried but didn't know what to think because I really didn't understand anything she was telling me. I had a chance to talk to her again on Monday and ask her to explain it to me more thoroughly because I didn't have a clue as to what she was talking about. She pulled out the sheets with the results and showed me the results from her first draw that was taken before transplant and the one that was taken recently. The first one she explained to me was normal, it had the karyotype XX (sex chromosome) and 19 chromosomes...which maybe for babies is normal, she told me it was. The new result showed that her karyotype is still XX which was surprising since her donor was male they expected it to be XY. But that wasn't the real concern. What was concerning is that her chromosomes have translocated which means they have been altered at some point and now are considered abnormal. Which leads me to the worst of it all...it appears that Scarlet may have myelodysplastic syndrome which is caused by abnormal chromosomes. It can affect the red blood cells, absolute neutraphil counts, and/or platelets usually causing signficant drops in whatever area it affects. This would explain her fluctuating ANC.
Myelodysplasia is also known as the precursor to acute myelogenous leukemia (AML) which is the worst form of leukemia. From what I've gathered myelodysplasia can be treated with therapy and in Scarlet's case she would continue to get GCSF (hormone shot to boost ANC). It can however, progress to AML and if it did it would be even more difficult to treat. The prognosis appears to be very grimm if she were to indeed have MDS and then progress into AML. I'm still not 100% on anything with this and only started researching last night through massive hysterical tears, so I could be wrong.
I found an article from the Oncology Journal that talked about transplant patients who got MDS(myelodysplastic syndrome) post transplant. Out of 400 patients 7% got MDS and all of them ended up dying either from MDS or from infection during a second transplant.
It is said that MDS can occur from radiotherapy, chemo associated medicines, and even prednisone. Scarlet had total body radiation and has been on prednisone since December. The radiation was considered a very small dose as well as her prednisone...the Immunologist we saw today said that in her 10 years working with transplant patients she has never seen anything like this especially in patients her age and also with her type of SCID (severe combined immunodeficiency).
I was pretty emotional yesterday and I felt like all was lost, again. This is the 5th time that I've felt this hopelessness since Scarlet has been born. Completely devastated, wanting to give up and die, all of that. But...this is the 5th time that Heavenly Father has given me the comfort and strength I've needed to endure. He's shown me that He has been there for us all along and after a long good cry and much deep contemplation I am ready once more to put everything in His hands. I can't explain to you the peace I felt, as if He was there with me, letting me know that everything would be ok. I prayed that He would help me to feel peace and even though I felt like all was lost and I wanted to wallow in my misery, I was blessed with that incredible feeling where I couldn't, even though I wanted to.
I talked awhile with Charlie and he is second best to God. He is amazing, he always knows exactly what to say and how to say it. I am still afraid of what might happen to Scarlet and what this means for her future. She has already endured so much in her short life, I hate to think about what else she may have to go through if they find that it is MDS.
I know that all will be well and that Scarlet is amazlingly strong and will give her all to overcome this and anything else she may be faced with.
It's fast Sunday this weekend and I'm asking my fellow LDS friends and family(and anyone else who would) to include Scarlet in their fasts once again.
We will know the results of the new marrow draw in a little over a week and all the Dr's will confer with another and let us know as soon as they can about what is going on inside and what we can expect.
By the way, the Immunologist today told me that Scarlet is actually still her original blood type and that she has not engrafted the donor's red blood cells which explains her XX karyotype.
She did talk about a few other things concerning her results but I need to end this and get back to playing with Scarlet.
We had a fun day at the Woodland Park Zoo today, sorry no pictures, I forgot my camera at home. She is having a good time here at Grandma and Grandpa Williams house.

Thanks for your prayers for Scarlet, please continue to pray for her.

Sunday, September 14, 2008

Scarlet Update

These pictures were taken last Thursday near Pike's Place in Seattle. We decided it would be fun to go on a walk since we were so close to downtown Seattle and still had a wait before our next and most exciting appt. at the SCCA.
A friendly old man on a tour offered to take our picture. I immediately said "yes" because looking around I wouldn't have trusted anyone else to take it for us. There were a lot of iffy people there. It was such a beautiful day in Seattle!
Scarlet really liked the seagulls and watching people. It's always such fun watching her learn new things and take in new experiences.

As to her "exciting" appt. We had a meeting with her Continuing Care transplant doctor Jean Sanders and nurse Denise who has followed Scarlet's care for a long time now. Scarlet and Grandma were in the playroom on the floor below having a great time so we could concentrate on what they would be telling us. I would never have allowed Scarlet to play in a "playroom" except at SCCA because everything is cleaned in between patients and only one family is allowed at a time. I wanted to add that just in case you were wondering about her and germs, etc.

Dr. Sanders had most of the test results with her and reviewed them before giving us any answers to our questions. They have drawn lots of Scarlet's blood over the past month and can tell alot from a little. She also had the results of the bone marrow draw and skin biopsy which showed little to no GVHD in the skin. Her bone marrow results were pretty close to being exactly as the last draw. She has 97% donor in her CD-3 ( T-cells) and only 6% donor in her CD-33(B-cells, granulocytes). They are pleased with her T-cells and are ok with her B-cells being only 6 percent donor. They say that is pretty common and not necessary like with the T-cells. Scarlet's ANC (absolute neutrophil count) has been fluctuating strangely over the past several months and their response to that is "She's just being Scarlet" they can't tell us why one day her ANC is 800 and the next 7,000. A normal ANC is 4,000-7,000 if her counts get lower than 500 she could make herself sick and create sepsis in the body from her own flora.
Her overall T-cell function is still weak and they expected that because she is on so many immune suppressant drugs and expect that she will go up in numbers when the doses taper and she is finally free of immune supressing medicines.
We went berry picking while staying with the Quimby family in Seattle for our appts. They brought me the sacrament nearly every Sunday while in the hospital with Scarlet. Mandy and Tom have become great friends and helped me so much while going through transplant with Scarlet.

The plan is to keep weekly blood draws to test her ANC, CMV (cytomegalovirus-which has been negative for 3 weeks now! Yea!) , etc. She will be having her hickman line removed in October and replaced with a portacatheter, the scheduled date is for October 30 and she'll be seen for an eye appt. the following day, so we'll be spending Halloween at the hospital just like last year which is actually great because they have an awesome Halloween party for all the kids on the SCCA floor at Children's and I'm sure they will love to have Scarlet there.

I was a little nervous about removing her hickman line because she would still be having the weekly blood draws and will still be getting IVIG each month which is an intravenous infusion that takes several hours. I was worried they would have to put an IV in each time for that and poke veins for blood draws. Scarlet's had enough of that in her life and they had difficulty getting veins and would have to poke several times, it's awful, I would have rather kept the hickman.
But the port sounds great. It will be in the same spot as her hickman line and all they will do is poke where it is and have access to a vein. So, she will still be getting poked but they said they can numb her first which works for me. I'm excited to give her a bath and not worry about her lines falling in the tub or her tugging on them and then needing another repair...which is another story in itself and I will certainly blog on that later!

Mandy and Tom with their baby Finley on our way to the berries on the Gilman trail nearby.

Back to her results. The doctor said she is ok to go to the store with me now and even to church and the park too! We will always have to be cautious about the sun and UV rays with her skin because she will always be susceptible to skin GVHD (graft vs. host disease). We'll still need to keep her away from sick kids or kids who haven't been immunized atleast until she has been. Which is also news to us. We swear they told us she would never get live immunizations but now they are saying they will immunize her next year some time. They plan to give her some non-live immunizations next month after we talk with the immunologist. We have an appt. with them in a week or so and will know more then. I'm a little freaked out about giving her immunizations period. I've always been afraid of autism, which, I know isn't as bad as having your kid die from the disease.

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Grandma Debbie bought Scarlet a monkey backpack. Scarlet LOVES Monkeys!!

So, if she gets a cold she'll be ok, if she gets the flu even, she'll be ok...hopefully. Even normal healthy kids can die from the flu. With all of this in mind we are still supposed to be very careful with her especially until she has tapered completely off her medicines.

I can't think of anything else Dr. Sanders may have told us, but we did meet with her Kidney doctor, Dr. Hingarani on Wednesday. She said she didn't find any proteins in her last urine test. That they will do another one in 3-6 months and will plan to do another Iothalamate test (check the archives for details) next year. She still has chronic kidney disease and she doesn't know if it will reverse she is more concerned about stopping it's progress into stage 4. They stopped the medicine, foscarnet, that was the culprit causing the kidney disease, in May. Dr. Sanders said that most kids recover but Dr. Hingarani, the kidney specialist, can't give us any guarantees. We are torn in what to believe but are certain Heavenly Father will continue to take care of her. She also reminded us that kids with kidney disease often have growth issues and that they will continue to monitor her growth and if needed they will give her a growth hormone. However, Dr. Sanders was actually really pleased with Scarlet's growth, she called it "Catch up growth". She is now in 12 month clothes which for us is exciting. I've loved having my tiny baby stay small for so long but it is time for her to grow.

Scarlet also had the misfortune of seeing the Ophthalmologist at Children's. I say that because she had to have yellow drops put in her eyes to test for dryness associated with GVHD and then have her eyes dilated. She hated both. Dr. B noticed Scarlet had some pseudopapilladema in her eyes. It is nerve swelling that can cause permanent eye damage. This time the cause is from her FK-506, Tacrolimus drug. She wants to see her again, and that is the appt on Halloween. I haven't had a chance to read up on papilladema yet and if you met the Dr. she is great but a little out there and didn't get that I didn't understand a whole lot of what she was saying and wasn't following her as she expected I should be. Scarlet also had a visual acuity test done the next day to test her vision clarity. Supposedly it is ok, which is great! So after the re-test they will talk with her Transplant dr. about whether or not to taper the medicine quicker to spare her eyesight. More on that later.

She also saw the SCCA (Seattle Cancer Care Alliance) Dentist. She was a German woman from Berlin. She told us that she often finds kids with kidney disease have bad teeth which explains the slight graying in Scarlet's top teeth. She also told us we need to start flossing her teeth and getting her to start brushing with an actual toothbrush and not the little finger one. She said that before she tried looking into Scarlet's teeth then she learned it's nearly impossible. We do brush her teeth every night, but flossing too? Yeah, right! We'll try, but I doubt she'll let us near her with floss.
Our busy week included getting X-rays for Scarlet too. They did a chest X-Ray and then they did something called a bone age where they check the growth of her bones. They only needed a shot of her hand which is pretty interesting.

One last thing, if you can remember, Scarlet's cause for having SCID was due to the lack of the ADA enzyme which created a toxicity killing off all of her infection fighting cells. They checked her for her ADA enzyme (which is in every cell in the body) and there were some strange results. The transplant doctor deferred to the Immunologist, who we will be seeing in a week or so. The normal on one of the scales was approx. 40-60 and Scarlet was only .8. She didn't know what this meant, if it was normal or not. In going through the transplant with Scarlet you come across a lot of deferring and we have become used to waiting to hear more. I'm a little worried at what this might mean and whether or not it has anything to do with the fluctuating ANC cells. We just don't know yet and hopefully they will. More on that later.
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Just another funny video!

Today is Sunday and Scarlet's 2nd time going to church. We took her to Sacrament meeting like they told us we could. It was wonderful and difficult bringing her with us. We kept passing her around to each other to keep her distracted, she's getting really good at the "back bend and slip out of your parent's hands" thing. She was fascinated with the piano playing. She watched her play nearly throughout the entire choir song. She loves playing the piano, before it was slamming her hands on the keys but now she carefully touches each key and it is really beautiful to me, probably because I'm her mommy.

She's gone to the store a few times with us. We of course lysol the shopping cart and are careful not to let her put her hands in her mouth, we also are sure to carry hand sanitizer with us. I am reluctant to use it too frequently because I've heard babies and kids have tested positive for alcohol in their blood from overuse, just in case you were worried. But, keeping her safe from germs is most important to us so we use it when it's needed.

Looking over this blog-turned novel, you really are a true friend if you've endured it's length.
Thank you for your prayers for Scarlet. Can you believe how well she has come out of this??
I believe in miracles and for us she is proof enough.

Final Bone Marrow Draw

You may already know that we spent last week in Seattle for Scarlet's 1 year post-transplant appts. In the above shot Scarlet and Daddy are playing together while we wait for her bone marrow aspiration and skin biopsy at Children's hospital. I remember when we first came to Children's she would wear those blue baby robes which fit her well now but swallowed her before. I wish I could have one to keep. It opens a floodgate of memories seeing them and being in the hospital. Scarlet was a trooper. Babies get anaesthesia before bone marrow draws so she had to be fasting for the procedure. She did so good. Our appt. was for 9am but when we got there they told us 9:30am and we weren't even seen until a little after 10am. Little baby was hungry!
Scarlet had a bone marrow draw a few months ago and she had the same nurse again which was really fun. I like it when they remember Scarlet and play with her. I feel better about leaving her with them. The lady in blue is the anaesthsiologist and you can see her preparing to inject what we call "sleepy milk" into Scarlet's hickman line.
It only takes a few seconds before she falls into a deep sleep. I was able to hold her until she did. They let me take a quick picture and then we needed to leave the room.
We waited in the room next door until they wheeled her tiny sleeping body in. We watched her sleep and Charlie petted her head. A nurse was called in to do vitals every 5 minutes until she woke up. I thought it was a great chance to finally clip her nails! I got one hand done and as soon as I was ready for the second she jumped awake. The nurse warned me about that and cautioned me about clipping her nails and accidentally cutting her if she awoke suddenly. I guess I didn't really believe her. Either way, she was fine, but I only got one hand done.
Each time they do a draw and biopsy it is always on her right bum-cheek. She has a constellation of little scars now which get bigger as she grows. I should have told them to do them in a flower or a heart shape like a little carebear. :)

Saturday, September 13, 2008

Oasis Concert

This has been a summer of concerts for us. This was my third this summer! We are kind of making up for last summer and a whole year of feeling trapped. This first picture is of Matt something or other, I'll fill it in when I ask Charlie who he is. He sounds a lot like a country Jack Johnson. Maybe some of you think Jack Johnson sounds country...but I don't think so, I think he sounds Haole Local Islandish-that really isn't a word or actual description, but I think it kinda fits. This guy was the first opening band for Oasis. I wasn't expecting a second opening band which leads me to Ryan Adams in the picture below...
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They were great too! There was something a little weird about them, but they were cool at the same time. I couldn't help staring at the guitarist who looked like he was 50 and barely moved around at all. The lead singer, I guess his name is Ryan, was all over the place which balanced them out; he was pretty fun to watch. I was sure glad they had 2 opening acts for Oasis because Oasis definitely disappointed.
I remember first listening to them in the 9th grade. I would blast Wonderwall and daydream about the many guys I had crushes on. I was so excited to finally get to see them in concert. Looking around at what kind of people were there with me, I realized how old I actually am and that 9th grade was a looooonnngg time ago. As I mentioned before I was disapointed and I'll tell you why.
Liam, I think that's his name, was so BORING! And not only that but whenever he sang (which really wasn't very much) he looked like a little boy who had to use the bathroom as you can see in the picture. When he wasn't singing he was yelling at the hidden sound crew to bump up the mic, walking off and on the stage, or staring down the crowd. The most exciting part of the concert was when he yelled at someone in the audience. I couldn't make out what he was saying exactly but he seemed pretty angry. His brother Noel is the writer of most if not all the songs they sing and whenever Liam decided to ditch he would sing in his place. In all actuality, I liked him a lot better. He sings great and is a super talented musician. I was put off by Liam bad attitude and whiny behavior, but who knows, maybe he was just having a bad day. I still love Oasis music even though the concert kinda stank. We have one last concert of our Summer of Concerts, Weezer!!! Another band I remember from my junior high years. Some things just don't go out of style. Stay tuned!

Salsa Disaster

I've appropriately entitled this blog Salsa Disaster, as you can see from the picture above it was a pretty successful mess! My sister-in-law Kellie and I decided we would make some spicy salsa. It was my idea to use the food processor to chop the ingredients but I failed to tell Kellie to pulse it and not fully blend it. So, we ended up with salsa smoothie which wasn't so great as a salsa but actually ended up being really useful. I used it in my chimichanga mixture and for something else, I can't remember.
We were really hoping for some good salsa that day especially since we had so much fresh stuff to go in it. Sorry Kellie!

Wednesday, September 3, 2008

Scarlet and Starla

Scarlet was finally able to meet her cousin Starla for the first time a couple weeks ago. Erik, Charlie's brother graduated from college and they came home for a week to visit. Scarlet really hasn't been around many kids, she has been around her 2nd cousins a few times but when they are together they never touch or get too close, so seeing Starla so frequently was a new thing for her. She really wasn't sure what to make of her. I tried to get her to touch Starla's hand but she pulled her hand away and didn't want anything to do with touching her. Starla used a few of Scarlet's things that she has outgrown, like the bumbo and excersaucer, Scarlet isn't used to sharing so it was funny watching her new-found interest in her old things once Starla was using them.
Starla is such a cutie. You really can't tell in pictures but she does have red hair and her head is fuzzy like a peach, it's a lot of fun to rub. :)
Here is Scarlet after she sat herself in the old bumbo because she saw Starla in there and then she couldn't get back out.
Erik celebrated his 26th birthday while he was here so we had an outdoor get together at the Smith home. Scarlet got to see fireworks again, somebody found some huge sparklers at the Anderson house and brought them up for the kids to see. It was a fun night of playing and eating yummy cheesecake.