It was late this afternoon when I remembered today is Day +225.  I spent the morning trying to convince Naomi that doing her history and geography was not impossible…. then spent about an hour listening to her sing and make up songs about math being fun.

When I realized today was Day +225, we were in the middle of Grammar and Micayah, Malakye & Lauryn were definitely bored.  So, the conversation went like this:

Me: Oh! Today is +225!

Micayah: UGH! We need to get a cake.  We cannot let Day +225 (said sarcastically) go by without a cake.

Malakye: We should get a cake for Day +226, too.

Micayah: Yeah!  You owe us a lot of cakes  By now, we should have eaten 225 cakes since January 15th.

Punks.  See if I buy them a cake.

Sydney is not in pain anymore.  Her family has made a huge impact on my life although I never met them personally.  A year ago, before Sept 23, 2013 when Naomi was diagnosed, I never even knew Aplastic Anemia existed.  I never imagined my life would be impacted by such an illness and so many people who I have never met.  The following is a post from Fight With Sydney Elizabeth’s Facebook page. 

The last few days have been such a wonderful blessing. To see people from all over the world uniting in the common cause of praying for our Sydney Elizabeth has blessed us beyond measure!

When we made the decision to take her home from Childrens Hospital, we did so in faith that she would be healed and made whole. It is with the greatest mixture of joy and sorrow that we tell you she is now healed and her body is whole. Her spirit is with her Savior Jesus Christ, and the whole realm of Heaven rejoiced as she passed from this life into life eternal!

She fought so valiantly, and she has now won the ultimate victory! To God Be All the Glory, for we will see her again!

Please stay connected to this page for updates on Celebration of Life information that will be coming very soon!

We truly do love all of you, and our lives are richer because of you. Our hearts are broken, but Sydney’s spirit and story will live on!

With all our love,

David and Heather Lemon

 

I am going to hug Micayah a little harder today. 

I have been sharing Sydney’s on Facebook.  I need to post it here as well. Sydney was diagnosed with Aplastic Anemia in March 2014 and has been fighting ever since.  Multiple infections, fungal infections, transfusions of blood and platelets, and the drs have said there is nothing more medically they can do for her.  She is resting at home on oxygen and seeking the prayers of everyone.  Her family is asking that we spread her story to increase awareness about Aplastic Anemia and especially complications caused by fungal infections.

I was in touch with her family via email and text back in the summer as they researched her transplant options at City of Hope. We almost met but her appt with our Dr was going on while we were in the waiting room; then they took us back to the examining room before her meeting with the transplant team ended.   She has a beautiful smile.  I have held her close to my heart constantly.  Please keep this family in your prayers.

https://www.facebook.com/fightwithsydneyelizabeth 

We found out today that both of Naomi’s virus reports were favorable. So, we likely never will know what caused her temps to be high, but we are thankful that her temps have stayed low for the past week and a half! (I still suspect her meds are contributing to high temps, as side effect lists of both her meds list fevers as potential side effects. But I am not a dr, although I feel like I play one at home….).

I continue to be thankful that her dose has not been increased lately and count down the days until she can be off meds all together. (Only 149 days to 1 year!)

Naomi had a much anticipated meeting this evening with her Make-a-Wish team. They were very sweet and brought gifts for all of the children. They were surprised by Naomi’s requests and the reasons for which she asked for her requests. They commented on how thoughtful she was in her request. I am so anxious to tell everyone what she requested, and was surprised by it as well because she had been discussing a few options and possible wishes. It was not until they were here that she shared with all of us what her final decision was. So, we will all have to see if her first wish will be granted…. And then I will share. 🙂

A late birthday gift arrived today from someone we never met but who has touched us deeply. Back in February and March, while hanging out in CA, I applied for multiple grants on Naomi’s behalf. They were all to attempt to get some of her medical bills covered. Most came back with a simple letter apologizing for a lack of funds.

Jerry and Nancy Hollenkamp co-founded the Aubrey Rose Foundation after their daughter, Aubrey, died right before her 3rd birthday, after experiencing multiple cardiac surgeries and then a heart and double lung transplant at the age of 18 months. The mission of the Aubrey Rose Foundation is to extend support to families with children battling life threatening illnesses.

They have generously paid off the pediatrician bills that remained from Naomi’s initial hospitalization when she was diagnosed last September and October. The amount they paid was almost $1500. In addition to sending us a very personalized letter, they sent each of our children a gift and included a handwritten note apologizing for the delay in assistance. They explained that there was a shortage of funding for sometime.

I am in awe of the compassion and support they have shown our family and cannot express gratitude enough for the financial burden they lifted for our family. Aubrey Rose, although I never knew her, has touched my life.

For more information about the Aubrey Rose Foundation, you can visit:
http://www.aubreyrose.org/aboutus

In other news, our visit to COH on Monday was cancelled since Naomi saw local doctors this week. We will now go to COH after Labor Day! What a long break this ends up being!

All of her labs from the ER visit are back. Her cyclosporine level is low again, being 116, when it should be 250-300. But news from COH today is that we are NOT increasing her dose. Yay!!!!

All blood and urine cultures showed final results of NO bacteria growth – thank God. Now, we just await the viral test results.

I made the difficult decision of taking Naomi out of gymnastics again. While she was doing very well, the fevers were coming at the end of the week…. After having been at the gym. I fear that the combination of meds and the hot gym pushed her hydration levels too far. So at this point the plan is to wait until after we wean her from meds to have her return to regular classes. Also, I have to admit that the anniversary of her getting sick is sneaking closer and the beginning of virus season concerns me this year. Cyclosporine makes her most at-risk for a viral infection. Being at the gym as kids return to school and illnesses start to go around is not what I want for her this year. She is disappointed but certainly understands why we have made this decision. We can still attend open gym which is during the day while most children are at school, or just continue to practice at home. Not ideal, but best, for now.

Our lioness is 7 today. A family ritual is that the birthday person gets to plans all the meals for the day. So, Naomi has chosen eggs and ham for breakfast, fruit and a veggie shake for lunch, and sloppy joes for dinner. She also choose Sweet Addiction ice cream sandwiches on cookies as her treat. We ordered a catering package that is a make-your-own ice cream sandwich. Yum! The children will really enjoy making their own.

I do have to share an experience from last year because it is very fitting to her birthday…and to the purpose of this blog and why you are so intimately involved in her life.

A year ago on this day, when Naomi turned 6, a well-meaning person gave her a card with A.A. Milne’s poem “Now we are six.” I LOVE Winnie-the-Pooh, from the old Disney that I grew up watching. I can remember seeing Winnie-the-Pooh and Mousercize on the Disney channel in the early mornings while my grandfather prepared for work. I personally never got off the sofa to Mousercize, but loved to watch it. :). I shared my love of Winnie-the-Pooh with my children. When Micayah was young, I purchased the full set of A.A.Milne books and read them to all the children. We have read them repeatedly and are due to read them again for Niamh and Caitriona.

So, when Naomi got that poem in a card, it was fitting because she was turning 6. But the last line was a little haunting to me even then.

“Now that I am six I am clever as clever
I think I’ll be six forever and ever.”

Maybe it was a premonition that her 6th year would not be an ideal child’s experience, but somehow for a brief moment on her birthday last year I feared she would indeed be 6 forever and ever and maybe something tragic would happen. Honestly, this was not the only premonition I had last summer that life was about to change. On another day, after my Grandmother had left from a vacation with us, I was in the kitchen working on an ordinary day, while they children were all in the room playing and Aaron was home, and I had a sense that I had just experienced the last good week I would have in a while. I remember thinking that we had lived a very blessed life and were about to experience hardship like never before. I could not explain it and tried to push it from my mind. It felt like something big was about to happen and my memories of being with my grandmother would be the experience to hang on to during the coming days. Late in a September, when Naomi was diagnosed with Aplastic Anemia, that poem on her birthday card came to mind immediately. Also, the day my Grandmother flew out, in early August, and the doom I felt in my heart.

So, I wrote all that to get this off my mind and heart to celebrate today freely. And after taking with the children about this today, we have realized that, in a way, a part of Naomi will always be six. Her marrow is new and gives her a new start at life.

Today, we intend to enjoy life completely. It also seems fitting that tonight we get to attend the Vigil for the Assumption of Mary so that we can give thanks to God and all of you for the many, many prayers you have said for Naomi and our family these past 11 months. We are so Blessed.

Here is to Naomi’s 7th birthday. May her days be bright, happy and full of all the things the life of a 7 year should be!

At least so far! Temps are back down in the 98s and she is acting fine. We visited Dr. Rashid on Tuesday. While there, her blood counts were fine, again. They did draw blood to test her for CMV and EBV viruses. Please pray that those results are negative.
I have been a hound dog on her to keep her drinking. I have also really been focusing on low sugar foods, high amount of vegetables and limited high triglyceride foods. I have her on a source of omega oils that includes 7 plant sources and is 3 times the omegas she was taking in on her previous oil supplement. This was recommended by COH to reduce her inflammation levels. We are also really focusing on keeping her body in an alkaline state, which means we decreased grains especially and she drinks lemon water a lot. We have been applying some antiviral essential oils topically, and honestly have been most days since transplant. Frankincense, thyme and eucalyptus all diluted in fractionated coconut oil are antivirals. Up to this point, I have believed the essential oils to have really helped her stay well while recovering. Hope that is still the case!
Tomorrow, August 14, will be Naomi’s 7th birthday. We pray for good news on cyclosporine levels, and anything else that might come our way. Also, we pray that her temp stays below 101. My orders are to go get another IV antibiotic if that temp goes over 101. The last IV did not go so smoothly for her and she was terribly upset afterwards. I hope she does not have to endure another, so please pray temps stay down!

We made it through the day without a temp over 100.8! She woke (under a fleece blanket) with that temp and it decreased throughout the day. Her temp tonight is 98.3! So, we are very happy that no readmission was necessary today. Our orders this morning were to go get a second round of antibiotics for anything over 101. By time I was told that, around 11am, she was already down into the 99s and continued to drop throughout the day.

Tomorrow, we will visit Dr. Rashid and have a CMV and EBV viral tests done to rule out that a virus may be active in her body. We have not heard any results from the cultures done at the emergency room on Sunday. In this case, no news IS good news.

We are thankful for all the prayers on her behalf. Thank you!

Easier than writing a post, considering my limited capacity for thinking this morning, here is the info I provided for Naomi’s doctors today. Please pray that we will have answers about these fluctuating temps and that it will be easily correctable and not a major infection. It amazes me how inconvenient Naomi finds these fevers because otherwise she is fine. Good appetite, happy, doing flips around the house. We need answers.

I wanted to update you on Naomi.

As I discussed with Dr. Pawlowska at a few visits, Naomi has had low grade fevers (high 99s to low 100s, never having gone over 100.4) at the end of the week. She takes Bactrim on Mondays and Tuesdays and those fevers seem to be consistent on Wednesday, Thursday, Friday.

But this week, the low grade fever continued to Saturday. On Sunday, she woke from a nap after church with a fever of 102.7. She was under a fleece blanket. So I waited an hour and rechecked. It was 101.6. I took her to the ER at St. Rose Siena.

When we got there, she was 100.9. About 2 hours later, they rechecked and she was 101.3. They administered Tylenol, did blood tests and a urine test. Her CBCs were fine. They said her crp was a little high 1.2 on a scale of .3 to 1.0. Otherwise she has no symptoms of infection. Dr. Andruz and Dr. Bernstein both physically examined her.

She was administered a dose of ceftriaxone via IV. When we left there, her temp was 98.9. We were instructed to follow up with Dr. Rashid for blood culture results on Monday. Dr. Andruz also did a cyclosporine level and said those results would be in today, Monday.
Thank you,
Kristy

We have done a relaxed school schedule this summer. We intend to have the 2013-2014 year caught up be December. Then, we will do the 2014-2105 year by the end of 2015 summer. We will then be all caught up.

The children have made it simple to try to catch up and stick to this schedule…. Most days. We did take a generous amount of time off for fun, too.

The reason for this post today is to say that despite being hospitalized and not doing school work diligently all year long, Naomi completed her first grade spelling curriculum yesterday. Today, she completed her first grade math curriculum with a score of 116/117 on her final exam. I am very impressed!

And she rang the bell at gymnastics, again.  This time for her back-walkover from standing position.  It is safe to say her back-walkovers are just about perfect now.  She was not doing them this well before the transplant…. She is simply amazing!

On Day +200, we hung out at home and ate chocolate chip cookies as our treat.  Last week, we went out for lunch and dessert with friends and spent our budget for treats.  😉

Her labs from last week trickled in throughout the week, and reminded us how hard it is to stay hydrated in the desert, especially while on kidney-toxic meds.  Her BUN, creatinine, potassium, and triglycerides were way high.  We did have a potassium and fatty meal right before her appt which the dr recognized as possibly making the levels temporarily inflated.  We will see on August 18th when she reports to COH if those values continue to be high.  

We are extremely thankful for the 80-90 degree weather this week giving us a break.  We continue to hound her to drink more water….. and countdown the days until she is done with cyclosporine.