Sunday, May 30, 2010

At Home for Five Hours

One of the favorite movies for Sarah and Hannah is Pollyanna. In the movie, the little girl Pollyanna teaches everyone the true meaning of thankfulness by bringing out the good in all situations. We are having to copy Pollyanna's attitude by trying to think of what we need to be thankful for because we are a good bit tired and discouraged.

Sarah was discharged from the hospital today at 2pm. We were finally all home and everyone was exhausted so we had long naps. Sarah woke up at 5 and she was running a fever. So in five short hours we are back at the hospital (emergency room). Hopefully we will go home soon once she finishes her antibiotics, but we are still concerned that this virus/cold/infection keeps rearing it's ugly head. They are doing more test tonight and hopefully something will show.

As far as her finger, we are going to see a tumor specialist on Tuesday. He is working with an orthopedic doctor and he will talk to us on Tuesday and plan the biopsy later this week or early next week. None of the doctors are confident they have seen this type of tumor/lesion before and so they are not making any commitments. I've been praying that God bring us new mercies each day with encouragement through the doctor's words and we have felt that. All of the doctors do not believe it is a new type of bone cancer. (the worst case scenario) The tumor specialist and orthopedic doctor both feel it is a benign tumor that is more aggressive than others. (best case scenario). The test to our faith is they are not ruling out the a rare, really unprecedented possibility that the leukemia has come back in this type of bone tumor. Our Heavenly Father gave us encouragement with this issue with our hematologist doctor in the hospital taking us through her blood counts to show us that nothing is really showing a relapse. Of course, we will not know until we go for the biopsy.

We ask you to continue to remember Sarah as she will have another treatment on Wednesday, start steroids and then have this biopsy. Even if it is a benign tumor the removal will be pretty hard surgery to make sure her finger continues to grow correctly. So we sit at the emergency room remembering we are to be thankful in all circumstances and as we look to the glory of Christ who has felt pain as a human and as Hebrews tells us that understands our pain, we find thankfulness.

I am exhausted so hopefully I did not ramble too much. Anne will read this and edit it soon. :)

Friday, May 28, 2010

First Hospital Stay on This Side of the Ocean

When we went in to the clinic today to follow up on the ER visit, Sarah had some signs of dehydration and she was still vomiting quite a bit, so they decided to admit her after the MRI was finished. She did great in the MRI which turned out to be over an hour. Jay stayed in the room with her at her head as she was in the tube with earphones on listening to her music. We had thought there would be a movie to watch, but there was only music. Jay said she was so brave and did everything she was asked to do even though she started off a bit teary-eyed.
Then around 5pm, she was admitted to the hospital. The good news is that her heart rate is already coming down as she is getting fluids, but she is still vomiting. If we get that under control, she should be able to go home tomorrow. A fellow mom who has a son with Leukemia recommended a new anti-nausea drug to me and they are trying it out now to see if it works for Sarah.
The bad news is that the MRI did show that she has some sort of tumor. Although this news is hard to hear and threatens to steal our hope and trust, we are still by God's mercy able to persevere at this time and continue to look to Him and no where else. Pray that He holds us in that place.
Tomorrow the bone doctors will come by and check out how they will biopsy her hand (take a piece of it out to test it) so we can see if it is malignant cancer or benign. The doctors seem to think there is more of a likelihood that it will be benign and something that would just require surgery and some recovery and that's it. There is a chance it could be the Leukemia or another cancer, but both of those would be very rare.
I am still able to pray in hope that it is not cancer and that this test of our faith will soon pass.
Thank you all for praying.

To the ER we go

Last night Sarah's temp. started climbing and by about 1am it reached the magic number where we have to call the hospital. The doctor said we needed to bring her in since she is in such an intense round of chemo. Jay took her while I stayed home with the others.
They got home this morning at 6:30am and the diagnosis was a possible urinary tract infection. Sarah is still running a fever but they gave her IV antibiotics and sent her home since her blood counts were so high. Which of course makes me uneasy thinking the high blood count is due to the Leukemia cells in her hand, which is why we have to get the MRI today.
I am about to go to my doctor's appointment to hopefully be done with this staph wound and also to try and convince them to let me stop the one antibiotic that is making me so nauseous and only take the other one.
Then we will probably have to go on into the child cancer clinic at the hospital to see further what is going on with Sarah. And the MRI is still at 3pm, but we found out it would take 2 hours and they don't have a slot for sedating her. But she hates being sedated so she says she has incentive to stay really still.
Jay is exhausted and went straight to sleep. Sarah slept some in the ER so she is wide awake. It is never good when the two adults are very sleepy and the three kids are ready to go:)
Since Sarah was at the ER this morning and had to have her port accessed, they agreed to keep the needle in and the tube attached and just tape it to her since they will use it this afternoon for the MRI! She is very happy not to have to get poked again today.

Thursday, May 27, 2010

A short update

Thanks so much for your emails and prayers. They have been so encouraging to us and we can feel the God of Peace, which transcends all understanding, as we guard our hearts and minds in Christ Jesus.

Yesterday, we had three doctor appointments and we do know more info:
1. Anne went first and the staph infection is responding the right way to the new antibiotics. She has to go back on Friday and hopefully they will be able to take out all of the "stuff" they have inside the place they cut out. We do know it is the antibiotics that is making her sick so she has another week to go with that.

2. I took Rebekah to the doctor when Anne was taking Hannah to her last ballet before the recital. Rebekah has an ear infection and she started her antibiotics yesterday. She is still not happy about losing her morning time with mommy but she is doing better.

3. Then I took Sarah to her treatment while Anne needed to stay home with Rebekah. Sarah endured another round of chemo that made her sick almost immediately. She vomited a few times last night but this morning she is feeling better.

4. Sarah's MRI for her hand is tomorrow at 3. Please take the time to pray for her because she will be in the tube for about 45 minutes. Anne and I will be able to sit at her feet so hopefully she will feel secure with us there. She has to be completely still for the entire process so that is a challenge for her but it is better than sedation. We don't know if we will have the results immediately or if we will have to wait until Monday. We continue to rest in Jesus and cast our burdens to Him. His grace is truly sufficient. This doesn't mean that Anne and I are going about life as normal, but it does mean that each time the horrors of the "what ifs" come to our mind, we call on His name to protect our hearts and minds. In this way, His grace is sufficient.

Blessings, Jay

Tuesday, May 25, 2010

A Mess

This past week has not be a good one for us. Last week's treatment was very hard on Sarah. We've been having to give nausea medicine every six hours to keep her from being sick. Along with this she is taking steroids so her stomach feels a little nausea and hunger at the same time. She asked me the other day in a very pitiful voice, "Daddy, have you ever felt nauseous and hungry at the same time?" I said, "No, I can't say I have ever felt that before!"

The weekend was not any better as Rebekah has picked up another cold. We think it might just be allergies, but she has a fever and a horrible cough. On Sunday, Hannah started feeling sick with a cough and a low grade fever. I finally had to force Anne to go to the doctor because of what we thought was a spider bite on her back. It turned out to be staph infection so she had to have it removed and then yesterday, she developed more bumps which means she could be "colonized". She also is fighting a horrible case of nausea. To add to Rebekah's woes, Anne is being forced to ween Rebekah because of the strong antibiotics she is having to take for the staph infection. So little Rebekah is sick and being weened at the same time. I must say, the Clark house does not have many happy people. We are trying to keep our joy through the fruit of the spirit in all of this.

Yesterday, another storyline developed which is tempting us to stress and be very anxious. After Sarah received her PEG shot (this is when three nurses stand around Sarah and give her three shots at one time), we talked to the doctor. Last week, Sarah formed a little bump around her left index finger. We showed the doctor and she sent us to have an X-ray. The X-ray shows something is not normal but they cannot tell if it is just an odd-looking fracture or possibly something much worse. There is a probability the leukemia could come back in her bones, so they cannot rule out it could be cancer. This is also another side effect of the chemo - other cancers. She has another treatment tomorrow, and then she has an MRI on her hand on Friday. I know it sounds strange, but I am really hoping it is a fracture. Please be in prayer for us at this time, especially Sarah. She can sense from us when something is not good, and it is making her nervous also. Pray for peace, that only our Savior can give, and for there to be nothing wrong with her finger.

We praise God for you sharing our burden with us.

Blessings, Jay

Wednesday, May 19, 2010

A Miracle

Today was a 6 hour hospital visit in which Sarah got lots of blood drawn, a spinal tap procedure and two IV chemo drugs. She was groggy for a long while after waking up from the procedure and tonight has been sick a couple of times. We started steroids again tonight for a week, and she wasn't able to keep all of them down tonight. But she tried so hard and really did give it her best even with feeling so sick and tired. We continue to be very proud of her.
The pictures (click to enlarge) are of the Little House on the Prairie play that our family went to on Sunday night at the Fair Park Music Hall. A wonderful friend asked the Manager of the Summer Musicals to please donate some tickets for us and he donated four for our family - the best seats we have ever had! He even asked us to come to the Executive Lounge during intermission to meet Sarah. He gave her a beautiful children's book about the theater and Hannah was beyond excited to get Root Beard (Beer). The play was just wonderful, and we all had a great night.
During these past two weeks of rest for Sarah, we were also able to finally meet another girl Sarah's age who has Leukemia and is a year ahead of us in treatment. I have been emailing her mom from the beginning and she has been a great help and source of encouragement and info. for me. It was so nice to get our families together. Sarah was happy to meet someone going through similar things and I even overhead them playing doctor at one point and of course they were treating everyone's Leukemia:)
Two weeks ago, I blogged about that horrible day at Hannah's ballet when the teacher didn't call me and they class was trying on their costume's for the recital that day for the whole class time and Hannah doesn't have one since we joined too late to order one and too late for Hannah to be in the recital. (That was the morning that I was taking Sarah's temperature every five minutes because it was rising and actually we went straight to the hospital from the ballet studio - not a good day.) Well, when we were at the hospital today, the dance studio called me while my father was with Hannah at her ballet class. She assured me that Hannah was just fine, and that she was calling because the last shipment of costumes came in and there was an extra one. I told her that I had talked to another mom last week who had joined in Jan. and hadn't received her costume yet so it was surely hers. Then the studio called me right back and said that it did belong to that other little girl but that there was STILL an extra one that they have no idea why it was there. Well, we knew right away how it got there - God was blessing a certain little girl who has been so good about not being able to be in the recital and who has still practiced her dance faithfully and been so attentive in class and nice to her classmates! So, in five minutes today we have added a major event into our already crazy life - a dance recital at the Eisemann Center. Hannah was without words when Sarah told her the good news, and we are now praying asking God to take care of the details and doing so with so much faith, a might add, as we have just witnessed Him doing a miracle in Hannah's little life.
We are so thankful to God for continue to prove Himself to us when we need it most. He is a loving God.
Seems there is a delay in getting insurance to approve Sarah's leg braces so we are looking a longer wait than expected. We are trying to remain in the peace that God has this under control and it will work out as He has planned. We are still awaiting approval for the physical therapy, but the therapist is able to come for four free visits even without insurance approval, and Sarah is already doing so well!
Thank you all for your prayers and all the meals we have received over the past few months and all the encouragement and practical help. We are able to see and feel God caring for us through you.

Monday, May 17, 2010

Prayer Request

It has been a wonderful couple of weeks between treatments. Anne will update the blog soon with fun pictures of some of the events we were able to attend. Our little break comes to a stop on Wednesday with the beginning of the next stage of the treatment. Below are dates to keep in mind so you can be praying specifically for us.

May 19th- 8:00 AM- Spinal Tap, 2 different IV infusions.
May 19th to 26th- Daily steroid pills! Not excited about being back on steroids.
May 24th- 10 AM- Chemo shot.
May 26th- 10 AM- 2 different IV infusions.
June 2nd- 2 different IV infusions.
June 2nd -8th- Daily steroid pills.
June 9th- check numbers to see if she can continue to the second part of this treatment.

Physical Therapy:
May 18th and 20th- Start physical therapy at home on Tuesday and Thursdays for six months. Please be praying for all of us as this is going to be a hard road. Sarah's assessment showed her walking/running/flexibility is to a 4 year old level so we have a lot of strength to build up.

Ankle braces- we should receive the braces early next week. This will be another thing people will look at and bring more attention to her. (Not the fun type of attention.) Please pray she understands the braces will help her gain her strength in her ankles faster.

Tuesday, May 11, 2010

Video Update

Monday, May 3, 2010

Sharing the Suffering

Today, Sarah had her final treatment for the Interim Maintenance stage. She did a great job. These days our morning family devotions have been on the fruit of the spirit, and this week is joy. This morning before we left, we talked about one way to find joy in hard times is to remember God's blessings in your life. We did that today and God blessed the time with joy. Anne had one of her dear friends come by and bring us breakfast at the hospital since we had to start the day so early. She sat with us during the IV fusion and it was a great time catching up with her. God answered our prayers and sent joyful blessings throughout the day.

After Sarah's nap, we went to the barbershop for me to share in Sarah's sufferings. As you can see from the picture, it was a makeover for me. As a father, watching her suffer physically has been so difficult. One of my biggest responsibilities is to protect her. Instead I am usually holding her as people stick her with needles and inflict all different types of pain. I cannot stop it from happening or share in that part, but I can find other areas to encourage her. One of those is by going bald with her. Of course, I was already working on that before this happened. :)

We received the protocol for the last part of the intensive treatments called delayed intensification. As the name says, it is going to be extremely intense. She starts on May 19th and over the 56 days, she will have a mixture of 7 chemo drugs and 1 steroid. Thankfully they are not all at the same time but in various combinations, but as you can imagine it is going to be very hard for her little body. We will keep you updated on the exact dates in a later post so you can keep her in your prayers.

Today, we go to bed joyful that the God of Hope is working in our lives.