IPAC

Today was Noelle's first Insulin treatment. She was really nervous. We joked about other's reactions to the treatment. Her friend, after hearing about the treatment said, "Is that safe?". My mom asked how they would bring her glucose levels back up. But she had a lot of nervous energy and a lot of anxiety about the unknown.

This helped. Just kidding. I do think they do chemo in this room for their cancer patients.

She made a glove turkey to help burn some energy:)

Supplies at the ready. First Noelle had her oxygen. This is meant to enhance all her treatments, and improve their effectiveness.

Then they tested Noelle's starting glucose level. According to a google search:), normal is 70-100. Noelle's was 88. She had to have 8 pokes this morning to check her glucose. This is hard because her fingertips are sensitive due to her oversensitive nerves. Next time we are going to try numbing them.

First Noelle was given Zofran and Toradol, then Insulin. Her glucose was monitored. When it dropped below 70, her antibiotic, Rocephin, was given. After the antibiotics, her glucose was again monitored. When it dropped below 40 she was given PME, Polymannan Extract, a plant based sugar and Dextrose.

She got very hot after treatment. This is her amazing cold hat;) Along with the PME and Dextrose, Noelle had to eat to help return her glucose to normal. She had to fast this morning before the treatment.

After her glucose was once again tested. (142) She hit the sauna and we were done for the day. Mondays, Wednesdays, and Fridays will be Noelle's IPAC days. They will also be our short days. Her treatment started at 8:30 and we were done about two hours later. So far, no negative reactions. Tuesdays and Thursdays will now be really long days. She will receive all her other treatments on these days. Two of which really mess with her stomach.

Night Driving

It is not unusual for Noelle and I to go for a drive around 8 in the evening. There are many evenings when Noelle cannot set aside her anxiety and relax enough to wind down and sleep. So we drive. Last night, we thought we would check out the fountain at night. You really cannot capture the beauty of this fountain. So for the fifteen minutes that it goes off every hour, I watched and Noelle tried to burn off her extra energy/anxiety:)

recap

Thursday: Noelle did not have a good day, especially emotionally. Her anxiety was out of control so we did not make it in to Envita for treatment. We did make it out that evening for supper. We had great burgers, with gluten free buns, at Rehab Burger.

Friday: Noelle had a great day of treatment. We did adjust the level of her Vitamin C due to the fact that she felt very ill after that treatment on Wednesday.

On Tuesday and Thursdays there are enough patients that there are actually assigned treatment rooms. We pretty much stay in the same room each time. One of the other patients in our room finished her treatment on Friday. She was cured of Ovarian Cancer! Her PET scan is clear! We will miss her, she was a ray of sunshine. She will be coming for maintenance doses and we will still be here in May when she comes back for her first maintenance dose. After hearing about some patients who come back for maintenance doses I asked Noelle's doctor if we should expect that for her. He said no.

Saturday: Pretty laid back day. I wake up pretty early; usually by 6:30. Probably because we go to bed early as well. Noelle sleeps later than I do so I started exercising in the morning. I have been either walking or swimming. The shoes that I brought have given me horrible blisters. So we found a sporting goods store, definitely not Scheels. Luckily, I found a self-confessed "shoe-nerd" who helped me find a new pair of shoes. Throw in a pair of goggles and a clearance Roxy purse for Noelle and we were good to go.

I have mentioned the diet we are trying to maintain, gluten-free, dairy-free, sugar-free, organic, and grass fed when appropriate. Well, everyone needs a cheat day. Saturdays have unofficially become our treat day. The first week was Sprinkles cupcakes, the second week was gluten free cheesecake from the farmer's market. This week was gelato!

It is described as a dessert lounge. How awesome! Noelle stayed with the cheesecake theme, and that is the flavor she chose. I was seriously tempted by the Adult Shakes, but chose a Mango gelato. Maybe next time!

And, today: I got up and swam, then listened to my home church service online. I actually listened outside since Noelle was still sleeping and I didn't have access to headphones. Noelle's stomach is pretty upset today. We did make a quick trip to Whole Foods. This afternoon she rested and I cross-stitched.

Not very exciting, I know. But this is it right now. I know some of Noelle's friends think that she is on vacation. That is certainly not the case. This is survival/healing mode.

Tomorrow Noelle starts the IPAC (Insulin) treatment. Please pray for her. Every new treatment brings with it its own set of side effects. This is directly treating the neurological Lyme so I would expect her emotions to be directly effected. Please continue to pray the her stomach can handle all of these treatments. So proud of her! She made it through week one of Flagyl, the oral antibiotic I mentioned earlier. It is a week on/week off.

NOELLE, YOU ARE AN OVERCOMER!!

"My Heart's Cry"

My parents sent me a box of books. Thanks Mom and Dad. In order to encourage my spiritual journey, I decided I would read one Christian book then one fiction. So this book is the first one I chose; written by Anne Graham Lotz. To be honest I am not in love with her writing style. She interrupts her writing with poetic lists way too often. But the following passage struck me:

"Actually, for the majority of people, including Christian leaders and teachers, life is just not fair! It's hard and often unlike what we expect."

The endnotes add, "While life is unfair and hard for everyone, Christians and non-Christians alike, the Christian has a decided advantage because we know our pressures, pain, and problems are not wasted. They serve a divine purpose that is ultimately for our good and God's glory."

Romans 8:28, "And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them."

Doctor's Appointment

We will meet with the Doctor at Envita every two weeks. Today we had our first follow-up appointment. We reviewed some of the test results that have come in. We learned many important things. Noelle's immune system is operating at a level that is good for the state of her chronic illness. The Doctor is confident that Noelle will get better!

We did discover that Noelle is fighting two other chronic infections. She has Human Herpesvirus 6 (HHV 6). Not related to the sexually transmitted Herpes virus. This virus if very common in children under 2. For Noelle, it has become chronic and persistent. The Hydrogen Peroxide and Vitamin C infusions Noelle is receiving will cover this infection. Noelle also has a bacterial infection called Mycroplasma Pneumoniae. This infection is both active and chronic. The antibiotics Noelle is on will cover this infection as well.

We are still waiting for the results of Noelle's Lyme co-infection test results. She was tested for Babesiosa and Ehrilchosis.

Noelle tested low in Potassium. This is a result of the medication that she is taking to correct the pressure in her head that was causing vision issues and optic nerve issues. She also tested very low in Vitamin D. Preferred levels are above 60, her's was 19. She will be adding both Potassium and Vitamin D supplements to her already vast regime of medicines and supplements.

Noelle has been experiencing more nausea than usual. This is most likely due to the treatments themselves, especially Vitamin C and the Hydrogen Peroxide. The Hydrogen Peroxide is pretty awful, it is the one I described earlier that gives a bad taste and even makes the patients' emit an odor through their pores following treatment. The doctor prescribed a nausea patch today, so we will try that tomorrow.

Since Sunday, Noelle has also experienced more emotional symptoms. This is very much a part of the neurological Lyme which we are battling. Please pray against the anxiety and depression, a general feeling of not being in control of one's emotions.

Thank you, Jesus!

I had prayed that we would receive a tax refund. I knew that it would help the financial strain from the costs of medical treatments. Today we learned that we are receiving a substantial refund! Very exciting! Great reminder that God cares about us, despite Noelle's health struggles.

Verse for today

This was in my devotional from "Jesus Today".

Matthew 6:34,
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.", the Message.

Clinging to God's words.

Flagyl

Noelle added Flagyl, an oral antibiotic today. This means for the first time she is taking three different antibiotics at one time, two IV ones and this oral. Last time she tried to take this antibiotic she took a quarter of a pill each day. Now she will take two pills a day. She is very nervous about the side effects. Flagyl is used to kill off the cyst form of Lyme.

Today we had a long, long day. I am not sure why it took so long, but we were at the clinic for about six hours. We still need to get Noelle's x-ray done. The place where they do the x-rays is not open on weekends. They are open from 8:30 until 5:00. So we either need to go before treatment or after, pretty tough.

Movie night (afternoon)!

Sunday afternoon we went to a movie! I felt so normal. I used to be addicted to movies. I love them so much, so it was really fun. It was a good movie. May have to read the books. I even had edamame as a movie snack! Crazy.

Loaner car!!

Thanks to the generosity of friends, Bill and Nelda, we have a car to use while we are here. We returned our rental car on Saturday when I took Sabrina and Scott to the airport. We will save over $2000. Thanks so much to those of you that prayed along side us for this. Thanks again to our friends!!

Fountain Hills

Saturday morning we decided to check out the "world famous" fountain in Fountain Hills. It is actually very impressive. Sabrina and Scott fed the ducks. We forgot Noelle's wheelchair so we didn't get to walk around much. This weekend was very pain filled for her.

Saturday afternoon Scott and Sabrina flew back to Iowa:( It was really rough. Sabrina broke down at the airport. Then I sobbed my way to my car. Pretty sure people thought I was crazy. While the two of us cried, Scott said maybe they could come visit again. Miss my Boo-boo.

A day in our life

5:22 a.m., I receive a text from a friend suggesting I need to update my blog. FYI: Arizona is two hours behind Iowa!

9:45, Our day starts at Envita

First stop, the vitals chair.

Next stop, the treatment room. Envita has six treatment rooms. Three of them are semi-private, and three are community rooms. Today we are in room four, a community room.

As the day progresses the seats will fill. A woman from Canada, nearing the end of her treatment for cancer. She is here with a friend. A woman from Arizona, with Lyme, here with her son. A woman from Massachusetts, also, with Lyme.

Two of her multi-colored IV bags. The yellow one is a Hydrogen Peroxide treatment that will potentially make Noelle smell like creamed corn and makes her very nauseous. The pink one is for the chelation of her high lead levels.

Last treatment of the day is the sauna. Great for detoxification. We are set for Scott and Sabrina to pick us up at 1:45. Four hours of treatment today. We head back to our home away from home. I fix Noelle toast and make myself a salad. Noelle's legs begin to fill with extreme pain. Later her migraine will rage. These pains are not worse than she had at home. We have heard the fourth and fifth weeks are the worst. We decide to eat in.

Yummy gluten- free pizza! Noelle orders gluten-free, dairy- free "cheese" bread. Not quite so yummy. Noelle is doing great on her gluten- free, dairy- free, sugar- free, organic diet! I promised her that as soon as Scott and Sabrina head home I will do better about joining her. Scott is a bad influence. In fact, he found a great ice cream place just around the corner from where we are staying.

The girls all had sorbet…Strawberry for Noelle and Sabrina and Watermelon for mom. Scott splurged on a Turtle sundae, recommended by Alton Brown of the Food Network. Sweet Republic has many awards.

Scott says he's going back tomorrow. Told you he was a bad influence. So now it is 8:30 here in Scottsdale. Noelle is trying to rest. Sabrina and I are watching Frozen. Scott is watching basketball. And so ends Noelle's fifth day of treatment. Approximately 35 more to go.

Treatment continues

I think at this point Noelle has had her first treatment of everything but the insulin and the Vertirum therapy (the chiropractic treatment). We found out that she needs X-rays before they will do the chiropractic treatment, which is actually comforting.

Yesterday Noelle actually felt pretty much the same as always. Today right as her treatment ended she was hit with a lot of pain:(

Visitors!

Scott and Sabrina arrived on Saturday. It is so nice to see them. Though, as usual, balancing the needs of two very different girls can be interesting. Saturday night after their arrival we went out for a nice dinner, then took Sabrina swimming.

Noelle is trying to cut out sugar but we figured if we all shared a dessert it barely counted. This was chocolate covered cheesecake. It even had edible gold drizzled on top!

Sunday morning we went to the Sealife Aquarium. Very relaxing, something we all enjoy!

Noelle was fascinated with the sea turtles and who doesn't love pink jellyfish!

Sabrina had fun at the aquarium but has loved the pool! I promise to get a picture of her in her new swimsuit.

Sunday night we had the pleasure of having dinner at the home of some old friends. My roommate from college! It was wonderful to catch up and we had a delicious dinner. Not used to southwest architecture Sabrina said their house looked like a sand castle. Unfortunately Noelle did not feel well enough to join us.

Her treatment has begun

Yesterday we met Noelle's doctor. We really liked him. He is a naturapathic doctor. He has put together Noelle's treatment plan for the next 8 weeks.

I will try and explain some of them. Oxybosh is a method of oxygenating the blood. Chelation is to rid the body of toxins. In Noelle's case, she has high lead levels. The IPAC is a method of opening the blood/brain barrier so that the antibiotics can reach the Lyme in the brain. Insulin is actually injected via her PICC line. This causes her glucose to drop. The barrier opens to seek glucose and the antibiotics go in! Pretty cool. Doxycycline and Rocephin are her intravenous antibiotics. IVC is actually vitamin C to support her immune system. MSP is Silver which supports her immune system and helps with detoxification. H2O2 is Hydrogen Peroxide which is anti-viral (some Lyme co-infections are viral) and able to penetrate the blood/brain barrier. I honestly don't quite understand the biological injections, other than that they are custom for Noelle based on things her body is lacking. The infrared sauna is for detox. Noelle is very excited about that one. We actually have one at home but she has been able to use it due to her PICC line. Apparently this sauna functions at a lower temperature so that she can us it. She is however unable to use the Ozone sauna. The Vertibrum therapy is a chiropractic treatment designed to check for structural issues and be sure that all pathways are open for healing.

It is amazing and overwhelming!! Noelle is very nervous but excited. She has read about many of these treatments.

After her appointment yesterday we felt we deserved a treat! Noelle and I are big Cupcake Wars fans. Candace, one of the judges, opened the first cupcakery. One of her locations is in Scottsdale. So we had gluten-free and Red Velvet cupcakes at Sprinkles.

Today was Noelle's first treatment day. First they did some blood work. Then she started her infusions. They did not start her antibiotic today. She had the oxygen, silver, Biological and vitamin infusions. We also purchased her supplements. Eating healthy and taking supplements are a big part of the plan. We are trying to focus on organic fruits vegetable and meats. We are trying to avoid gluten, dairy and sugar. Ouch!!

Everyone we have met has been wonderful and has assured us that we are in the right place for treatment. Noelle does not have treatment on the weekends. Scott and Sabrina arrive tomorrow to spend their Spring Break with us. Yeah! It will be so fun.

We made it!

Thank you so much for all of your prayers. Yesterday was a long day but mostly very good. Dropping off Sabrina was a concern as she had expressed a lot of distress about us leaving. It went very well. No tears, from either of us. Mom and Dad came and prayed with us. We all laughed as Noelle and I tried to make our suitcases weigh under the required 40 pounds. We ended up checking three bags and two carry-ons. Eight weeks is a long time!

Scott drove us to the Cedar Rapids airport. Honesty maintaining our relationship through all of this the last three years or so has been difficult. Yesterday I was reminded of all I love about him. When we were first married and I was stressed or anxious he always said the perfect thing to bring me back to sanity. On our trip to the airport he was perfectly up to the task of reassuring us, distracting us, helping us and making us laugh. Thanks, honey. Shortly before boarding Noelle experienced major anxiety. They loaded the plane early which messed up the timing of her anti-anxiety pills, but we made it through. By the time we landed three hours later Noelle was in a lot of pain.

Things went fairly smoothly through picking up our luggage and renting our car. Then we had to make it to the car. So my tired girl pushed herself in the wheelchair and I pushed the cart of five suitcases. We reached the parking lot to find the sidewalk ramp blocked by a disabled truck. The driver and I watched as Noelle propelled herself over the curb! Thankfully she stayed in the chair! No way was she taking the long way at that point. The driver helped me get my luggage down the curb.

This Ford Fusion was the only "full" size car they had. Small compared to the Jeep Commander I usually drive. But we do like the cheerful color.

The trip from Mesa to Scottsdale was uneventful. Thankfully driving in five lanes of traffic doesn't bother me. And as long as I stayed in the right lane Noelle was able to keep her anxiety in check.

We are staying in a nice two bedroom suite/apartment.

I had to buy a plant to brighten up the place:) It is hard for me to be in a place with sunshine and not be near my garden.

We have agreed we need to take one day at a time. If we think ahead we start to panic. Two months is a long time.

So today we grocery shopped first. Noelle and I both like to cook and bake and are used to a very well stocked kitchen so this will be interesting. I think we did OK. Then we checked an all gluten free bakery. Noelle was in heaven!! We had gluten free breakfast sandwiches and brought back some yummies. Next we hit the lounge chairs at the pool for about 45 minutes. Since then Noelle has been resting and I have been reading. Until a good friend suggested I needed to blog:)

Your prayers and thoughts are so important to us! It keeps me from feeling alone. Tomorrow at noon is our first doctor's appointment. We have no idea what to expect. Our patient care coordinator did tell us to bring a snack as it will be a long day.

Prayer and Fasting

Acts 13:3, "So after more fasting and prayer, the men laid their hands on them and sent them on their way."

One week from today Noelle and I will embark on our very important trip to Arizona. We feel that we have been called to pray and fast before we leave. Monday, March 10th we will be fasting. If you would feel led to do that with us, it would be truly appreciated.

Noelle's top two immediate prayer requests, other than healing, are: 1. For travel, especially comfort and anxiety. Honestly she rarely spends more than an hour out of bed at a time, so it will be a long day even if things go perfectly. Pray especially for pain control.
2. She is asking for prayer that the place that we are staying will have comfortable beds. Since she is so uncomfortable this is very important!

Before we leave on this trip, we have another trip to make. My grandmother is turning 100! So we are traveling to Lincoln to celebrate with family. This is about a five hour trip. This will be difficult for Noelle also. Similar requests for this trip. I would add that it would be a good family time. We will take two cars to increase Noelle's comfort and give us more flexibility. Generally we drive boys and girls. Pray that Noelle and I would be able to have a pleasant time with Sabrina. I feel like this is especially important since our time together is limited. Noelle and Sabrina have basically opposite needs. Noelle prefers quiet, not so much for the six year old:) We will all need patience!

Thanks, as always, for your prayers!