One Down, One to Go

Last week was a difficult one. It started with a 10-hour day at the clinic with Sarah having a spinal tap then a couple of infusions followed by routine IV hydration. The spinal tap took twice as long since the doctor couldn't get the needle in the right place to get fluid out so they tried twice and finally got it to work. It took a long time for Sarah to wake up after the procedure, and she has had a pretty sore back since then. Sarah was so happy to have her friend, Alex, come to the hospital to help pass the time. And as you can see in the picture, the girls did some great crafts that Kristen, the Child Life specialist, brought to the room. The girls also got lollipops from Daisy in the coffee shot in the lobby - those always seem to bring big smiles.

I had to go back the next day with Sarah to be trained on giving her a shot so I could do the shots at home. She has to have shots four days in a row (same for next week). So, I have had to scrub up and inject chemo into Sarah's leg this week. It burns her going in so she cries until I can get it all in and then stop to massage her leg. I feel just awful and really don't think that I will be able to do it again next week. I am still devastated by last week and the pain in my heart is still so fresh.

I am so happy that this is our last phase of intense chemo. We are all struggling with being secluded and anti-social and bound by medical visits. Even though the upcoming 2-year maintenance won't be completely easy, I have hope that we can enter into social life again as we are in such need of fellowship and friendship. We have seen so clearly that this is impossible to continue to go through without support of those around us.

This phase has gotten Sarah down, and she has been in tears saying she doesn't want to be 'special' anymore just a normal kid. We have had all the talks about how chemo is such a blessing, and since it was discovered, it has helped cure so many. Even as I say it though, I know that I would have fallen apart way before now. Sarah really has been trusting God from the beginning and it has encouraged me to see it.

Yesterday she asked Jay if she would have gotten Leukemia a long time ago, would she have died. Jay said that yes, she most likely would have since before the 70s only 14% of kids with Leukemia survived. Hannah heard the conversation and got really upset saying so Sarah wouldn't die. Hannah didn't grasp what they were talking about. She was just so upset to think that Sarah could die at all. None of us really allow ourselves to think about losing Sarah. It is just too possible to even let our thoughts go there for a minute. I know how Hannah feels.

So we continue on, even in this harder time we find ourselves in right now. Thank you for lifting us up in your prayers, and we pray and ask God to help us continue this journey bringing Him glory.

video update

Stitches and Dim Sum

Some of you have seen the pattern - no blog update means we are enjoying a rest from chemo and side effects. We haven't written a blog update in 7 days, and we have been enjoying every one of those days without chemo. But we have still had three doctors visits to take out the stitches from the biopsy on her red bumps, take off her cast, and check her blood counts. There is still no definitive answer on what the red bumps are. They are fading though and no new ones have sprung up, so the doctors are just happy that it wasn't a bad infection of any sort.

Her stitches on her backside and leg are healing, and her finger is cast-free but pretty swollen with a big incision and a little pain. Sarah finally got the right sized sling and is enjoying the novelty.

After one of the appointments this past week, Sarah really wanted some Chinese food. She hasn't really had any since we have been back. So we went to a Dim Sum place and the people working there were from Hong Kong - Kowloon actually which is on the subway line from our house there. Sarah kept saying how happy she was for the food and the chopsticks and the hot po lai tea. Rebekah might have eaten the most as I had to keep stuffing pork bun and steamed shrimp bun into her mouth with my chopsticks.

Now we are getting ready for next week as we start the last round of the intense chemo for the next month.

I have just been going through the motions of cleaning and cooking and errands and such, not able to plan anything or even schedule a visit with anyone as we can only take each day as it comes right now. It has started to effect my spirit as well. I find myself just going through the motions of church and singing and reading the Bible, not really and truly fellowshipping, praising and worshiping. Don't know why I am in such a place. I do want to be excited again about praising God and longing to hear Him speak to me through His word. From past experience, such blah spiritual feelings stem from a self-centeredness. Funny how I am one of billions of people on a tiny planet in one of thousands of solar systems, and I still have a problem of making myself so important in my thoughts. I need a renewal in thinking, once again. God is the beginning of ALL things, everything. And I am truly grateful that He called my name to know Him and to search out the truths He has for us on this earth. It really is an exciting life if you take time to ask Him for eyes to see the true reality, to grasp the reason for our daily living here, to walk by faith and not by sight. I need to make the time to do that right now. Without it, all the errands and the cleaning and the cooking and the motions lose their meaning.

Hannah's Ballet Recital

Thank you for your prayers. Hannah enjoyed her 'first time ever on stage,' as she calls it. We might have uncovered a heart's desire and a talent of Hannah's. She really does love to dance and is actually really good at it. And it is so encouraging to me to hear her tell anyone who asks that she dances for God and He even sent a costume for her to be able to dance on the stage!

Sarah also felt good enough to attend Hannah's recital! We were so excited to enjoy the experience as a family. We even had both sets of the girls' grandparents there and their aunt, uncle, and four cousins. It was such a blessing.

During this next week, Sarah will get her stitches removed from the biopsies on her red bumps. And she will get her cast off if all looks well on her finger. We will also go get her blood counts checked to see how she is doing with the chemo. But she will not get any more chemo this week, which she is happy about.

The hard part starts on the 23rd now that it was delayed for the finger biopsy and the chicken pox scare. And although it will be one of the hardest chemo phases yet, it only lasts a few weeks.

I am praying even now for the strength only Jesus can give.

Sarah is Home

Sarah was able to come home yesterday afternoon after receiving her chemo. Please be praying she can keep hydrated so we don't have to make a trip back to the hospital.

The initial reports came back and she does not have chickenpox. We will know exactly what it is in a few days.

Another prayer is that Sarah feels good tomorrow to go watch Hannah's recital. It will mean a lot to all of us.

Blessings,

Jay

In the Holding Cell

We are still in Children's downtown, and Sarah is still in isolation until the pathology comes back to see if she is chickenpox free. The negative pressure isolation room opened up on the Oncology Ward, so we have been moved to a wonderful, new room with a great view of downtown. It has done wonders to lift our spirits. There have been a few traumatic events during this stay, and we are still learning the truth that "it is not the easy or contented life that makes folk hunger hard after the Lord Jesus." Even so, it is hard to surrender my mother's desire for my child to be comfortable and at ease. But we continue to help point Sarah's little heart to God even as we struggle at times. Most of the time it seems Sarah's heart is the one so near to God as He draws her throughout this journey. Faith like a child is so wonderful to watch.

One the pathology report comes back clean, Sarah will get more chemo today. This is the medicine that makes Sarah pretty sick for awhile. We pray she is able to see Hannah in her big stage debut on Wednesday.

Thank you for all of your prayers and encouragement.

Building Endurance

Wow! what a day!
Ok, a little before 8am, Sarah and I read the following verses: James 1: 2 Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.(NLT)
Sarah and I thought God really wanted us to be perfect and complete with all of the trials we are facing.

At 8am Sarah had her first ride in an ambulance. It was not just a regular ambulance but one that was specifically for kids. She had a flat screen to watch a movie as we drove to the other hospital. She loved it!

As the time neared for the biospy, we were tested again because the doctor was delayed almost 2 hours. Then the surgery lasted over 2 hours. I read to Anne a verse from Isaiah 26: 3 You (God) will keep in perfect peace
all who trust in you,
all whose thoughts are fixed on you!
4 Trust in the Lord always,
for the Lord God is the eternal Rock. (NLT)

Ok, I know you are waiting. Our God was merciful and the tumor is BENIGN! - not cancer! With all that is going on, this is such a needed encouragement. It is still a nasty tumor that will require us to see the specialist every three months for two to three years to make sure it does not come back. The major problem is it developed on her growth plate which could cause her finger to not grow correctly. (She now has her first cast.)

After Sarah woke up, they transfered her back to downtown. Anne is with her tonight. She will probably be in the hospital until Monday or Tuesday until the biospy of the bumps prove it is not chicken pox. So this weekend Anne and I will switch out.

In all of this, I am reminded what a wonderful best friend I have. A wife is truly a blessing and a gift from God. Days like today draw me more in love with my amazing wife. Over 80% of marriages end in divorce for parents with children with a serious illness. The reason is there is not a middle ground. You either come together or you grow apart. Thank God for using the Spirit to draw us together and even give us a few laughs as we waited on pins and needles for the doctor to give us the results. Anne was sweet to try to get my mind off of the situation by telling about the Amish fiction novels she is reading. Then the nurse took us to a consultation room and it was not very big and I started feeling dizzy. She made sure I opened the door and moved my chair close to the hall so I would not pass out. (I do not like small spaces especially as high as my blood pressure was!) I know these are not huge things, but they are times we share. I could not imagine going through this without my best friend and wonderful bride. So tonight we praise God for his answer to prayers, and we thank God for our marriage, our children and most of all His grace to trust Him with the future.

Admitted Downtown

Sarah was admitted downtown today since she developed about 20 red spots on her upper legs. No one is able to be sure of what it is, so they are being cautious since it could be chickenpox, which would not be good for her condition. It could be other viruses as well or another type of infection. they did a biopsy today and cut out two of the raised red spots to see what it is, but that takes 24 hours. We are still hoping to get the biopsy done on her hand tomorrow at 10am (which was already scheduled at the Legacy location so she might have her first ambulance ride up there and then back down to Dallas). This biopsy will require putting her out. She isn't so upset about that now since they didn't put her out to cut off the two bumps today. But she did so very well with minimal tears. She is just so strong.

Sarah is getting a bit down though just having to endure yet another setback. Even in the midst, we are seeing God's hand. Yesterday we got a few phone calls and somehow ended up with a few meals brought over in one day. And with one of the meals, there was some cash in an envelope. Now I understand why that happened - since we will be in the downtown hospital for several days now and Jay and I will be trading off being there, and Jay's parents are here to help out. So the meals will cover those days. Also, we had to pay tolls and parking and food and such today since we first has to go to the Legacy Children's hospital and then downtown to Dallas Children's hospital. Now we know why God sent the money, too! Thank you all for your faithfulness and service.

(Although next time several meals and some money come in at one time, we might just go ahead and pack a hospital bag!)

Another Change

We went to the hospital today to have Sarah's chemo and start her week of steroids and also to see her regular cancer doctor back from vacation. Dr. Appell came in to the room saying how she goes on a vacation for the first time in 1.5 years and Sarah goes to the ER twice, gets hospitalized, and gets a bone tumor. She said she was never going on vacation again. She was glad to be back and really made us feel at ease with how she took the reigns aggressively and wanted to speed up the process. So, we didn't end up getting chemo today or steroids since whatever the tumor turns out to be will affect how we proceed. So she is trying to get the biopsy/surgery moved up to tomorrow or Friday. And Sarah might have to be admitted just to be able to be ready at any time to go into the OR when there is a spot. We are waiting to hear back today from Dr. Appell. She feels fine with delaying Sarah's treatment a couple of days, but not for much longer, so that is why everything is rushed.

We will let you know how everything unfolds.

Also, some of you have asked about our Care Calendar and here is how you can find it and log on.

http://www.carecalendar.org/

The logon info is ID # 34875; Security code: 5891

Thank you for your continued prayers and encouragement - which, I know, sounds so cliche. But I can't imagine this journey without it!

More Information

Through God's wonderful grace and mercy, we were able to see the bone tumor specialist today. With yesterday being a holiday, it was going to be hard with referrals, etc. for the insurance, but everything worked out for us to go to the appointment.

It looks like they will perform the biopsy on June 14th. This is the only new information. The specialist said the same thing as the other doctor from this weekend so nothing new on the issue. They have to wait until Sarah finishes her 7 days of steroids that she starts tomorrow, and then wait a few days to get them out of her system. They will do the biopsy, and then if it is benign, they will cut the tumor out and repair the hole. If it is malignant, then the cancer doctors will determine what steps to take.

Please pray that the new nausea medicine works as she has chemo again tomorrow. We don't want to be back in the hospital with dehydration again, so she has to be able to keep liquids/foods down.

God has been filling us with strength and peace. We were actually having fun at the doctor's office today. It is great to see Sarah getting her strength back, and she had fun playing with her mama and daddy. She has also received an extra dose of happiness with her grandmama and granddaddy coming to stay with us. Jesus' love truly does endure forever and ever.