Thursday, July 30, 2009

an evenful day

Yesterday I could not get out of bed hardly at all. Around 6am I crawled to the bathroom and spent about 30 minutes trying to get on the toilet. When I tried to stand I took out the bathroom towel rack and hit the floor and eventually crawled back to bed. By 9am I could not move at all. Mike had a clinic appointment so we had to call his mom at the last minute to take him down there. I called a chiropractor and asked what their suggestions were. They told me to try to take enough medicine to get comfotable and come to their office. I took some muscle relaxers and a pain pill - so by 10:45 I was able to crawl to Danielle's car and sit backwards kneeling on the floor. Once at the office, they put me in a wheely chair backwards and pushed me into the office. The doctor did some physical therapy but I was still unable to stand or walk. So they called 911 and sent me in an ambulance to Upper Chesapeake. An MRI showed a (ruptured) herniated disc. I was very sick yesterday from all of the meds and not eating, but was more comfortable by evening. Danielle stayed at the hospital with me last night and took good care of me. They started me on a steriod to control the inflammation and with the pain pills I was able to get up several times to walk to the bathroom. I saw the Occupation Therapist this morning, she helped me with basic ways to sit, stand, roll, get dressed, etc. The Physycal Therapist came in and worked with me for about 30 minutes. It didnt really hurt, but now I am very sore from moving so much this morning. I am waiting to see the Neurosurgeon to tell me whether he thinks I need back surgery. That will determine when I get to go home. I will continue Physical Therapy regardless.
While I was having so much fun yesterday, Mike went into clinic for a blood draw and they determined that he needed a blood transfusion. This is all normal stuff that happens during chemotherapy, so there is nothing to be alarmed about, but the less amount of transfusions he gets, the better his body will continue to respond to his treatments. So we pray for minimal transfusions. They want to keep a closer eye on him so he is at clinic again today and tomorrow. He is still scheduled for his port-cath surgery on Monday. Mike's sister is taking the kids until Saturday, so I am grateful knowing they are ok while I am here and he is there.
I had planned to leave on Tuesday to go home and Mike was flying home on Wednesday, but now everything is up in the air again. I have no idea when I will be ready to make that drive.
Also, my cell phone broke on Monday so I have not been able to call, receive calls or text anyone all week. I apologize if you were not contacted personally about all of these happenings, but Mike and I have very little control over who gets called and when. Mike's mom dropped off my phone yesterday to get the replacement ordered, but wont have it until later this evening or tomorrow.

In light of all of this craziness, I feel such a peace of knowing that God is still God and He is in divine control. These things will not get us down, only make us stronger and better people with more love and compassion for others. It's all good. I know it will all be worth it someday. :) We are getting better everyday and before you know it, we will be back up and living normal healthy lives.

Tuesday, July 28, 2009

This past week was pretty rough. Mike did not have too many moments when he was feeling well. He was actually pretty sick most of the week. The doctor said it is from the additional chemo he recieved last Friday (the 17th). Yesterday he was throwing up at clinic from being so nauceous. :( His platelets were up to 185 (woohoo) but his plasma has been very low. He had to receive 4 bags of plasma Friday (24th) and 4 bags yesterday. The doctor said that is very normal, but he wants to keep an eye on him throughout this week, so he will have to go back on Wednesday and again on Friday. He is scheduled for his port-cath surgery next monday (3rd).

I am planning to leave Tuesday night with the kids to drive back to FL and fly Mike down on Wednesday with his mom. She will be staying with us for a couple weeks to help us get settled (thank God - cause I am going to need it!). The kids go back to school on the 17th so I will be pushing it a little to get them ready. I am trying not to panic. All of this also depends on how my doctor appointment goes tomorrow and how I feel next week. I hurt my back playing football in the rain on Sunday and I have been having a really hard time getting around. Hopefully I will be ok to make the drive by Tuesday.

Thanks to everyone for the continued support and prayers! Love you all!

Wednesday, July 22, 2009

quick little update

Mike went for blood work with morning and his platelets were at 138! :)

We also had some answered prayer with the SSA and Medicaid. At first no one would help me and I was getting a complete run around - after waiting two hours at SSA I was told that I have to do everything when I get back to FL and I could not get anything done or even started in the state of MD since I am not a resident. Then suddenly the sky parted and God's favor fell from heaven. They got me in for an appointment that afternoon (which normally takes a few weeks to schedule) and the nicest guy hooked me up with everything I needed to process Mike's application for disability benefits. He said that it normally takes 180 days for a decision, but my application would go through as a "QDD" and I could have a response by the end of this week! He also faxed all of my paperwork to FL Medicaid office for me. The next morning, I got a call from Medicaid saying they received the fax and explained that we are eligible for benefits and although there is a "share of cost" associated, they will help us to cover many of his medical bills. :) THANK GOD! And thanks to all of you for your prayers!! GOD IS LISTENING AND THE PRAYERS ARE WORKING!! These things dont just happen coincidentally. I know that with all of your prayers bombarding heaven, God must be faithful to move on them. We appreciate each one of you so much! Each prayer is so precious and I truly believe that each time you pray, you are opening the door for God to bless YOUR life and YOUR family as well. Prayers are seeds - and they will always bring a harvest, in one way or another.

Monday, July 20, 2009

last week of Phase 1

Mike is now in the final week of Phase one - he will go for blood work on Wednesday and a chemo treatment on Friday then he will have a two week break. We will use that time to transition back to FL and get ready to start the 4 weeks of intense daily treatments. I am a little overwhelmed when I think about getting back and trying to get the kids ready for school, etc... while he is undergoing those treatments. Thank God, his mom is going to fly down with him and spend a few weeks to help us get by.

Mike started a new drug in his chemo on Friday, unfortunately it made him very sick throughout the weekend. He has been very nauceous and tired. The doctor gave him a higher dosage for his nausea prescription. Today his platelets were at 86 (:-)) so he is showing improvement in that area and will most likely be able to have the port-cath surgery before we head back down south. That will make things alot easier on Mike so that he can take showers normally without worrying about the port getting wet or pulled and it will relieve me of the duty of flushing his lines daily. :) Its not hard, I just worry about germs every time I have to mess with it. Mike noticed some hair loss this morning...I really dont think that words can ever prepare someone for what they are about to experience while undergoing chemotherapy. We hear about all of the side effects, but living them is something totally different.

We are so grateful for everyone's contributions in every way - having great friends and family is really helping to lighten our burdens. I am so very grateful for the Fund that was set up to help us financially and the donations that are helping us to cover the many prescription costs, food on the run and gas costs that we are incurring each week. We literally would be charging all of it to credit cards if it weren't for your help. Please know how grateful we are and that we are praying for a mulititude of blessings upon each gift and giver! God never runs out of money & blessings so we know that it will be restored to you above and beyond!

Friday, July 17, 2009

a roller coaster day

I am writing from the clinic...watching Mike lay almost upside-down after his spinal tap...which went ok. Today we got the great news about Mike's bone marrow - that the Philadelphia Chromosone is not present in his blood which means that he is not likely to need a bone marrow transplant any time soon. We praise God for that! Also, his platelet count went up to 33 today so he did not need a transfusion as previously thought. All good news... :)

Then I got the report about his treatment change...instead of 5 days each month, its 5 days EVERY WEEK next month. I couldnt help but cry. I hate to be weak in front of Mike, I try to be strong and cry after I leave the room, but I was just so overwhelmed with that news. Just trying to figure out how to transition back to FL, get back to work, get the kids to and from school everyday and have him get to USF everyday (M-F) just makes me feel like I can't breathe. Also, found out that SSI (supplemental income) was denied because they thought Mike was getting unemployment benefits, but unemployment has not been paying him because he is unable to work. They said that the unemployment office has to fax over a letter of termination for SSI to be approved - yet I cant even get through to unemployment because when I call it says "I'm sorry, we do not have an operator available to take your call. Please try your call again later" and hangs up. How do I get them to fax something if they never answer the phone and dont return emails??? Then found out that Social Security Disability is still pending because they lost all of our information and we have to fill out forms by hand and mail them back. Unbelievable. I am trying to stay positive and not got so bogged down by all of these little things, but seriously?? How does this system expect families to get by?? I am sorry to vent all of this, but everyone keeps asking how things are going and I feel its best to be honest and not try to sugar coat everything all the time.
Today was a good day - we got some VERY great news and I just really want to focus on that. I have a wonderful husband who is getting stronger every day and will be around to walk our daughter down the aisle someday...he will be home in the evenings to tuck the kids in bed and read stories and play games, he will be at our dinner table and around for our birthdays and anniversary...for that, I am TRULY grateful.

Wednesday, July 15, 2009

A better week so far

The past few days have been pretty good. Mike has been feeling okay (not fabulous - but not miserable). He has been up and getting around a good bit. He has a good appetite and has been sleeping well most nights. He wakes up very early and can't go back to sleep once he is up, though. Yesterday, we were concerned because his port appeared to be clogged when I went to flush the line with heparin and we were not sure if they were going to have to redo the whole thing. Thank God, the nurse was able to unclog it during his clinic visit today. We were told on Monday that he would most likely need another platelet transfusion today because his counts have been so low - but when we got there today, they said that his platelet count actually went up 2 points since Monday (from 23 to 25) and he would not need the transfusion!! :) Your prayers are working!! We have still not gotten an answer back from the bone marrow biopsy. They called today and said the report was half way done but they could not give us any information until (most likely) Friday. We are praying and believing that its all good. We are going to attend a church service this evening. I know that miracles happen everyday - but especially in the presence of God.

My cousin Miranda and my Aunt Debi have generously offered to set up a meal schedule for us on the days that Mike is in the clinic (Monday, Wednesday and Friday). If you are interested in helping our family in this way, please contact Aunt Deb @ It definitely helps to relieve our stress to have dinners taken care of on those days.

Thanks again to everyone for all of the support and prayers. We are truly overwhelmed by everyone's love for our family.

Monday, July 13, 2009

It's Gonna Be Worth It All...

July 13

Mike was released from Hopkins on Saturday after they ran several tests and gave him another platelet transfusion. When his platelets get very low, he is at risk for internal bleeding, so they were concerned that there might have been some bleeding in his brain or an infection in his body. Thank God - the rests came back clear. The only test we are still waiting on is the bone marrow biopsy. Everyone keeps asking, but we have not gotten the results yet. I promise to let you know as soon as we find out.
He seemed to do well throughout most of the weekend. He said he just felt very tired and weak. Yesterday his family came over for a picnic, so it was nice to be able to visit with them and have a "normal" kind of day.
Today we went to the cancer clinic at Hopkins so Mike could have his blood drawn. They told us it would be a quick "in and out" visit but it turned into a 3 hour ordeal with saying he needs platelets and then saying that he did not need platelets. Needless to say, I was a little frustrated. I think one of the hardest parts of going to the clinic is being surrounded by so many sick people. If you have ever been there, you know what I am talking about. And some of them do not keep a positive perspective and only sit and complain about how sick & dying they are...just not the funnest environment to spend a few hours... :-/
Anyway, we are home now and we do not have to go back to clinic until Wednesday. They changed his routine to Monday, Wednesday and chemo on Fridays instead of Thursdays. So it gives us an extra day each week to not have to be anywhere - I am thanking God for that also!

June 29 - July 9 Updates

June 29 at 3:53pm
Yesterday Mike went to Patient First b/c he was running high fevers & his his body felt very weak. They said that his platelet count was very low so they transferred him to Johns Hopkins for further testing. This morning he was diagnosed with leukemia...we do not have all ofthe details yet, but he will be in the hospital (at Hopkins inBaltimore) for 4 weeks while he receives his first treatment. Please continue to keep us all in prayer. We know that God is in control over all & He nevers gives us more than we can handle. We are praying that Mike's body will respond well to treatment & that this will all go as smoothly as possible. Thank you all so much for your concern & support.

June 30
Latest update on Mike: He has been diagnosed with Acute Lymphoblastic Leukemia. They are doing a bone marrow check today & a spinal tap tomorrow- at that time they will give him his first chemo treatment. Most of his treatment will be in a pill, but he will get the chemo injections once a week. They have decided to treat him here (at JohnsHopkins Bayview) and monitor his progress for about a week. If everything goes well & the test results come back good, he will be able to leave the hospital & do his treatments on an outpatient basis. Thanks again for everyone's prayers & support. We know that we have along road ahead of us, but we are keeping a positive attitude in walking it out & getting to the other side.

July 1
Today Mike was scheduled for the procedure to insert the port on his chest (for easy access to veins during treatment) but his platelet count dropped to 14 so they do not want to risk doing the surgery today & have postponed it until tomorrow. They are going to do the spinal tap & a platelet transfusion this afternoon. He just had an echocardiogram done. We are just continuing to pray for favorable results on all tests. Mike spends most of his time resting between the high fevers. He sweats an unbelievable amount during those periods...its hard to witness-especially when he is sleeping. It looks like rain just falling from his forehead.
PLEASE TAKE NOTE THAT MIKE CAN NOT HAVE FRESH FLOWERS IN HIS ROOM & SHOULD NOT BE VISITED BY ANYONE WHO MAY BE SICK OR HAS A COLD. If you would like to send cards, you may send it to 515 Ponderosa DrBelAir, MD 21O14. That is where we will be staying when we are not at Hopkins. Non-floral arrangments can be sent to Johns Hopkins Bayview 494O Eastern Avenue Baltimore, MD 21224. Right now he is in room 64O.I will keep you updated if he is moved to the 5th floor.Thanks again to each of you for your encouragment. Every word inspiresus each day. :)

July 1 at 8:20pm
Mike has been moved to room 542. The platelet transfusion went well this afternoon. He had a small outbreak of hives, but went away quickly with Benedryl. The spinal tap, surgery to install port & first chemo treatment are scheduled for tomorrow. Right now he is resting comfortably- praying for a decent night of rest.

July 2 at 8:06pm
Today was kinda rough. Mike's spirit was very heavy through out the day as he faced several procedures. His plaelet count was still too low to insert the port-cath so they just did a small line through his neck. This allows them to access his veins without sticking him everytime. He also had the spinal tap which the doctor seemed pleased with. He received his first chemo treatment & so far has responded well. (Thank God). The doctor gave him medicine to reduce his stress & now he is a lot more comfortable & less anxious. We had a very nice visit from a close friend which brought a lot of peace to Mike. We're just taking one day at a time, trying to stay positive & keep looking to getting past all of this.

July 4
Just want to let you know that Mike has been resting comfortably since Thursday evening. He slept quite a bit yesterday. The results from the spinal tap came back good, so we are thankful for that. The only thing we are still really waiting to hear about is the bone marrow biopsy. If that comes back with favorable results, he should be released from the hospital very soon to continue his treatments on an outpatient basis. If for whatever reason that test comes back and the results are not favorable, Mike will likely need a bone marrow transplant in the near future. So please guide your prayers toward getting favorable results: specifically that the Philadelphia Chromosone is NOT present in his blood. I am hoping to get Mike up and walking around a little today, and maybe to find a good window to try to catch the Harbor fireworks this evening. Some of the nurses brought in 4th of July goodies for the patients, so we are not missing out on too much. ;-) We are continually grateful for everyone's prayers and support through this time. Your encouragement is helping us get through every day.
We hope everyone has a very safe and happy 4th!! Do something for me & Mike today and take these moments to really appreciate those around you.
All my love, Kristy

July 6
Well, the weekend was fairly uneventful. Mike was mostly awake through Saturday and Sunday. We had several visitors stop by to lift our spirits and bring encouragement. We tried to watch fireworks from the hospital, but we really couldn't see them. We saw several displays over the bay, but they were really far away. It was nice to see something, though. When I left to get clean clothes on Saturday Iwitnessed an accident on 95 about 5 cars ahead of me at about 85mph. It was very scary. Many people pulled over so I kept driving, but Iwas very shaken. Life is just so fragile...
On Sunday Mike's platelet count dropped dramatically so they gave him another transfusion. He's been getting hives, but Benedryl takes care of it. He got up and walked around a little bit. It was nice to get him out for some fresh air.
Johns Hopkins has chosen our family for a "case study" to try to learn more about the disease and how it affects families on a personal level. There are times that Mike feels like a "guinea pig" because there are so many doctors in and out, but they have really taken timeto get to know us personally - which you dont see everyday. One doctor we spent some time with said that he felt like he was forever changed by getting to know us and that he would always keep our family in his prayers. He was a little choked up leaving our room, so I actually think he meant it. So there have been a lot of touching moments already. Some of the nursing staff has been amazing - just going above and beyond to do anything and everything for us. We dont get that from everyone here, but most of them have been really great. We are hoping to be discharged today. We know it is pretty busy at the hospital today, so it may end up being tomorrow. We are trying not to get our hopes up too much, so we are not disappointed. But weare REALLY looking forward to getting into the comfort of "home".They are setting us up with a home health nurse twice a week. He will have to come down to Hopkins for blood tests every other day and chemo once a week until the end of July - after that he will only get treatment one week out of every month, but it will last for a full week. At that point, I think we will head back to Tampa so we can get settled back at home and get the kids ready to start the school year & hopefully get back into dance. The hemotologist has a doctor-friendat Moffitt (Cancer Center in Tampa) who studied at Hopkins with him,so we feel very good about transferring his care there. We miss our puppy and I am certainly ready to get back to work soon.
Thank you again to EVERYONE for EVERYTHING!!! We appreciate you all SO much! Every text message, Facebook comment, email...everything just encourages us like you have no idea! Every word from each of you individually has done so much more for us than you could ever know. And to everyone taking care of my kids, my house, my mail, my lawn...I LOVE YOU & APPRECIATE SO MUCH!! May God bless you abundantly for your generosity and willingness to help us!
Love you all, Kristy

July 9
Mike has had severe head aches since yesterday morning & had a low fever this morning. When he came in for chemotherapy this afternoon the doctor decided to admit him until at least Saturday to keep an eyeon him. They are concerned that there may be an its better to be safe than sorry. It was a very hard day for Mike. But on a lighter note, we have a much nicer hospital room this time. We have not heard results on the bone marrow yet. Please keep praying.