Details from the last few days

I just left Colleen and Len at the hospital and I am elated to report that Colleen is doing very well. She is now awake and alert back to her cheerful, joyous self. No more weird movements and no new problems to report.

The past few days have been scary for us. We were extremely concerned that something new had occurred in her brain. We left the hospital on wednesday night relieved and so thankful that God healed Colleen from her stroke. The movement and strength in her left side had returned and she was feeling very well. On thursday I went back to work thinking the storm was over. I came home for lunch and Colleen was laughing inappropriately seemingly unable to stop and having strange rhythmic movements of the arms, legs and neck almost seemed like she had cerebral palsy or those types of movements. She was rolling around on the floor and just behaving strangely. I called her hematologist who said to monitor her for an hour she felt this was just a symptom of the methotrexate or chemotherapy toxicity exhibiting itself in another way no reason for great concern. She said to bring her to the clinic in and hour if she had not improved.

 After eating lunch for about 10 minutes, her symptoms progressed so I told Chelsea we needed to get her to the clinic now. She said she was ok to take her to the clinic and I would meet her at the hospital after work. It took 2 of us to get her in the car. I returned to work and within 30 minutes the social worker called and said i needed to come right away. I asked what was going on and all she would say was that she was not doing well. As a nurse, this is often what we tell families when their loved one has coded or is on a ventilator. I really sort of freaked out thinking that Colleen was either dead or on a ventilator. I rushed to the hospital calling everyone I could think of to begin praying for Colleen. When I arrived at the trauma area in ER I was relieved to find out that she had just had what they felt was a seizure. I was immediately relieved she was sedated but stable.

Chelsea had arrived at childrens and used valet parking her symptoms were getting worse but there was no wheelchair to take her upstairs. A patient was discharged and Chelsea asked if she could use the wheelchair but since it was an recovery room chair, it was not available but the person was kind enough to transport them both to the hematology clinic. When they arrived in the clinic she began having terrible movements which required 5 nurses to hold her down to prevent her from injuring herself. The rapid response team was called to the clinic and she was given an ativan shot which helps relax muscles and stop seizures. She required 4 mgs a regular dose is 1 to 2 milligrams. While we were in trauma there were 2 children resuscitated- what wonderful nurses and doctors!!!!!!! Not sure how they deal with that everyday they are very special. Anyway, we spent from 4pm to right around midnight in the ER once again there were no beds available.

Once the ativan wore off, the symptoms returned so dextramethorthan or an ingredient in cough syrup which has been shown to help with the neurotoxicity from the chemotherapy was given. This caused her to go to sleep for 4 hours but when she woke up the symptoms returned- she was thrashing her arms and legs in the bed and was alert but had no control over her arms or legs. It was heartbreaking to see her so distraught laughing one second and sobbing the next because she could not control her body. We got to our room at about midnight the doctors were still not sure what was going on with her. They did give some more Ativan to relax the muscles and they gave benadryl which is supposed to help with these movements (dystonic movements). She fell asleep and was out until about 1130 am the next day friday. When she woke up the movements returned- Chelsea and I both had to protect her from hurting herself. Her platelet count is low so even a small injury can cause a lot of damage. The hematology team came to observe her and immediately called the neuro team. It took them over an hour to come but Dr. Raj Pukar the hematologist stayed with her distracting her with Harry Potter trivia. We were very grateful to her for staying with us during that time.

The chief of neurology arrived and stated that the stroke had caused an imbalance in the chemicals in the brain and this had disrupted the messages that the brain was sending to the body. He prescribed a medication called klonopin which helps with these dystonic movements. She finally got the medication about and hour after that and the movements stopped within 20 minutes. He also said that these symptoms only last about two to 4 weeks and usually go away totally- no promises of course but we were relieved to hear this.

After she took the klonipin and cough med she slept until her mri at 5 pm she had difficulty just holding her eyes opened. She then had an mri with sedation at about 8pm. She slept until this morning at about 1100. During the night she could not stand and was very uncoordinated. The MRI showed no new strokes or processes. I stayed with her last night and Len came up to the hospital about 1000 this am. I came home slept and cleaned a bit and went back at 500. I was elated to see her up and about, smiling and conversing with her friends.

We are thankful that  God healed Colleen , that the mri showed no new problem areas, for our friends and family who are faithfully praying for her. Our God is the great physician with the power to work miracles and he has shown his love and mercy to Colleen and our family by healing her so quickly.

Continue to pray that she will not have anymore side effects from the chemotherapy- she has to have high doses of the medication methotrexate later in her treatment. That she will continue to be free from viruses and infections and that God will give all of us the strength to get through the next 2 years.

Colleen may be discharged from the hospital tomorrow and i will post new pictures of her new hats. They are quite cute and so is she of course.

Hospital again

Colleen came home from the hospital last night. The doctors had decided that her stroke was likely caused by a different chemo drug than they had originally thought. She had been doing very well in the hospital, and didn't have to have that medicine for another few weeks. Her doctors were discussing how they would manage her body's reaction the next time she was given that particular chemo. She was doing very well and was happy to be home. 

This morning, however, she started behaving oddly. Eventually we decided that she would have to go into the hospital. Shortly after arriving in the clinic, Colleen's uncontrollable movements intensified and the doctors thought she was having a seizure. The staff here quickly got her some sedative in order to calm her down and stop the seizure. She will be admitted shortly for observation. The neurology team has since decided that this is likely not a seizure, but just an episode of odd behavior. Obviously they are trying to determine the cause.

Thank God

-that we arrived in the clinic before her symptoms were out of control.

-that the doctors got to her quickly and she did not injure herself.

Pray

-that the doctors can figure out the cause of her symptoms.

-that if needed, another chemotherapy plan can be found that will be effective in treating her leukemia.

-that she doesn't have anymore unusual side effects.

Chelsea

Stroke

We want to thank each of you who have taken time to pray for Colleen during this latest crisis. The movement in all extremities has returned- There is a bit of weakness in the left arm and leg but just slight and the doctors expect a full recovery.

  Colleen went for her weekly chemo treatment on friday. She had chemo in her port, chemo in her spine and transfusions of platelets and red blood cells. She was at clinic from 830 am to about 500pm. When she came home, she felt like her speech was slurring but Chelsea could not hear any problems with the speech. She took a nap until 8pm and when she woke up, her speech was incomprehesible. Chelsea called the doctors who recommended that she go to the ER. We arrived at er by 9pm but her speech had improved but was still a bit slurred. The er dr felt that this was  a side effect of the chemo vincristine which can affect the nerves in the face. She had a ct scan which showed a questionable area so she was kept overnight in the ER because there were no beds available. Chelsea stayed overnight with Colleen because i was on call in the recovery room at Annapolis. She was in the process of being discharged at noon when she began running into walls and staggering from weakness in the leg. She was then kept and an MRI was done at around 3pm. When she was done with the mri at 430 she was unable to move the left arm or leg and as time progressed, her left face was drooping, the tongue was no longer midline- This means that the facial nerves and all the nerves on the left side were being affected by a lack of oxgen to the brain or a stroke. The area of the brain which was affected was located off of a small artery so no blood clots were identified. We are unsure as to why this occured testing is still being done. One of the chemo drugs called esparagenase or PEG does cause strokes in one percent of cancer patients and we are suspecting that this may be the culprit. After the MRI, it was evident that she had a stroke so i wanted her placed in and icu immediately. There were no beds at Childrens or at U of M. The nurse practitioner called U of M and arranged a bed. Since the transport team at Childrens was tied up at Crittenon Hospital, the life flight team at U of M was going to fly down and pick up Colleen. We had been told that this was the plan and then there was a glitch with the bed-not sure what. Plan B went into effect. Fresh frozen plasma was given in an attempt to replace the clotting elements that are missing because of the chemo which somehow helps resolve the stroke.

 Colleen had not slept in the noisy er for over 24 hours so i told them to get a bed asap at the icu anywhere so she could rest. A bed then came available in the Pediatric ICU at Childrens so by about 100 am on Sunday we were finally in a room. The paralysis in Colleens left arm and leg lasted until about 5am on Sunday when she was able to move them slightly. The doctors in the icu felt recovery would probably last at least a few weeks. She stayed in the icu until 200 pm yesterday when she was transferred to 677 in the hematology oncology unit. I am pleased to report that she has probably 95 percent of the strength back in her arm and leg and with a bit of outpatient therapy they feel she will have a 100 percent recovery.  Chelsea read that this PEG chemo can cause this and recovery usually occurs within 2 days. We are thankful for Gods grace during this time. Even her primary doctor was really concerned about her status so thank you for praying. I am sorry for any confusion. The cell phones do not work in the ER but texting does. I just felt an urgency to inform everyone so they could begin praying.Thank you again we appreciate each of you and thank you to my nursing colleagues who picked up my on call time at Annapolis this weekend.

answered prayer

Colleen is doing much better today. She is able to walk pretty well and her strength is returning quickly. She was not transfered to Ann Arbor last night. She was able to get a room in the PICU at Children's almost as quickly as she would have at U of M, so they decided not to transfer her. She is out of the PICU and on her normal unit now. She has to stay for observation and some more tests to make sure that everything is okay and that it was the chemo that caused her problems. She'd rather be home, but is tired and mostly just happy that she's feeling so well again.

Thank you everyone for your prayers. They truly have been answered.

Chelsea

Please Pray

Colleen was admitted last night to Children's hospital with slurred speech. They did a CAT scan of her head which didn't show any unexpected anomalies. They kept her overnight for observation and by 9am she was doing perfectly fine. They examined her again at noon and discharged her because she was still doing fine. Before we could walk out of her room and down the hall, she started stumbling to the point that I wasn't comfortable leaving the hospital. In hopes that she had low blood sugar, we ordered some food. While eating, her left arm became very weak. The doctors ordered an MRI and told us that it could take up to 2 days to get her in. God provided us a slot in under 10 minutes. By the time the test was completed, she was unable to move her left side. The MRI showed that an area of her brain is getting inadequate blood. Essentially, she has had a stroke. There is no blood clot and no bleeding. A vessel has narrowed. This is a rare side effect that is sometimes seen with one of the Chemotherapy medications she had during her clinic appointment yesterday. Her Hematologist called me at home a little while ago. She said that most often blood flow is restored through supportive care--IV fluids and blood transfusions. She also said that usually there are not usually long term effects that cannot be corrected through physical therapy.
Right now, Colleen and my parents are still in the ER at Children's Hospital. There is no room available at that hospital or at Mott Hospital.

Thank God
-that it took over 3 hours to discharge Colleen this morning so that we were still in the hospital
-that He provided an MRI appointment so quickly (I think she may hold the record.)

Please pray
-that Colleen will respond well to the treatment and not experience any long term damage.
-that they are able to find a room soon as the ER room is very small, loud, and uncomfortable for her.
-that God will comfort Colleen and that she stays positive through this very scary experience.

Please pray.

Thanks everyone.
Chelsea

What are we doing about school work?

Many ask how we are managing schoolwork. Fortunately, my oldest daughter is a chemistry education major so she is able to tutor Colleen and assist her with her homework. Colleen has not felt up to doing much homework so i think we will be playing catch up this summer but the school has been very flexible. Since
Colleen is in the 8th grade, she can learn the major concepts and not be worried about GPA's. If she was in the 9th grade this would be much more complicated. She was born on December 2nd which means she missed the cutoff for the year. I was so disappointed that she was not born earlier because i wanted Colleen and Cydnie to be just one year behind each other in school- they are only 15 months apart. I now see that in Gods wisdom he chose to have her born after December 1st. God knows the plan for our lives and he arranges what is best for us. Colleen has had a rough few weeks- does not have much of an appetite and is now having some pain again at the port site probably related to wearing the scoliosis brace which is pulling on the muscles in that area. Please pray that she will feel better and be able to accomplish some school work and that the pain in the port area will improve. Colleen will have 2 weeks without the cytaribine which is given by injections. We are hoping and praying that she will have a few good weeks. Today she is feeling a bit better she was able to eat some and she seems to be feeling more like herself. Thank you for praying.

How long is treatment for acute lymphoblastic leukemia

Colleen had her clinic visit on friday. She got chemotherapy in the port and had a spinal tap with chemotherapy. She was doing well this morning but I had to give her 3 injections of chemotherapy around 130 and she got really tired after having them. We also ventured out today to shop at Target since her white count was a bit improved so maybe she was exhausted from the outing. Anyway she slept until 530 and woke up nauseated and vomiting. We are grateful that her feet do not hurt and her headache is gone at the moment. Her appetite is really nonexistent at this point. Please pray that she will be able to eat more.

Many have asked us how often and how long her treatments will be. At this point, they tell us that she will have weekly chemotherapy treatments for the first 6 months and then every other week for 2 months and then once a month on a maintenance chemotherapy for the remainder of the 2 and a half to 3 year period. Please continue to pray that Colleen will remain healthy, free from infection, and that she will have the strength to endure the chemotherapy especially for the next 6 and a half months for the intense chemotherapy. Thank you